Podcasts about Thalassemia

In this week's episode we'll learn about asciminib plus dasatinib in Philadelphia chromosome-positive acute leukemia. In a phase 1 study, combining two tyrosine kinase inhibitors with distinct mechanisms of action had encouraging activity in patients with de novo disease. After that: new research demonstrates that the iron exporter ferroportin contributes to the iron-sensing properties of liver endothelial cells. But is it the primary mediator of systemic iron homeostasis? Finally: anemia in pregnant patients with beta-thalassemia minor. In the third trimester, about one-third of patients have hemoglobin levels of 9 grams per deciliter or lower. This report may help to guide the appropriate diagnosis of anemia while limiting unnecessary testing and interventions. Featured Articles:Asciminib plus dasatinib and prednisone for Philadelphia chromosome–positive acute leukemiaThe hepcidin-ferroportin axis modulates liver endothelial cell BMP expression to influence iron homeostasis in miceβ-Thalassemia minor is associated with high rates of worsening anemia in pregnancy

In this episode I cover the different type so anaemia as I have found it can cause much confusion and there are so many different types, from mild iron deficiency to types that can be life threatening. Iron deficiency anaemia: https://www.nhs.uk/conditions/iron-deficiency-anaemia/Bone marrow: https://my.clevelandclinic.org/health/body/22818-bone-marrowHaem and non haem iron: https://www.mkuh.nhs.uk/patient-information-leaflet/good-sources-of-ironVitamin C and iron: https://www.canr.msu.edu/news/iron_and_vitamin_c_the_perfect_pairAplastic anaemia: https://www.gosh.nhs.uk/conditions-and-treatments/conditions-we-treat/aplastic-anaemia/Pernicious anaemia: https://my.clevelandclinic.org/health/diseases/22377-pernicious-anemiaAnaemia of chronic disease: https://my.clevelandclinic.org/health/diseases/14477-anemia-of-chronic-diseaseMCV on a blood count: https://medlineplus.gov/lab-tests/mcv-mean-corpuscular-volume/Leukaemia: https://www.cancerresearchuk.org/about-cancer/leukaemiaHaemolytic anaemia: https://www.hopkinsmedicine.org/health/conditions-and-diseases/hemolytic-anemiaSickle cell disease: https://www.nhs.uk/conditions/sickle-cell-disease/Thalassemia: https://my.clevelandclinic.org/health/diseases/14508-thalassemiasIron diet sheet: https://kingstonhospital.nhs.uk/information/iron-diet-sheet/Eating your greens: https://pubmed.ncbi.nlm.nih.gov/34034049/ Hosted on Acast. See acast.com/privacy for more information.

On this episode of Thal Pals, NinaMaria hosts Tamara Schryver, president of the Thrive with Pyruvate Kinase Deficiency Organization. They discuss the importance of nutrition for patients with hemolytic anemias such as thalassemia and PKD. Tamara offers practical dietary tips and emphasizes the significance of nutrient-dense foods and vitamins. Stay tuned for the next episode, where they delve deeper into these topics.   SHOW DESCRIPTION Thal Pals: The Alpha Beta Revolution Podcast is intended for patients, caregivers, providers, and the greater community of people who are impacted by Thalassemia.  Each episode, Thal Pals strives to provide listeners with critical education, the latest scientific updates, and voices from the Thalassemia community.     TRANSPARENCY STATEMENT  Thal Pals: The Alpha Beta Revolution Podcast is made possible by Agios Pharmaceuticals Inc. Visit Agios.com to learn more. The following Agios-supported programs are intended for informational and educational purposes only and are not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions. Hosts featured in this episode have been compensated for their time.  

On this episode of Thal Pals, hosts NinaMaria Badalamenti and Dr. Kevin Kuo delve into the second part of their discussion on lab tests. They explore the impact of factors like menstruation, nutrition, and illness on ferritin levels, and emphasize the importance of monitoring and managing iron levels through diet and medication. They also explain how MRI is used to measure iron accumulation in vital organs such as the liver and heart, the implications of different readings, and the recommended frequency of these tests. The episode concludes with advice on working collaboratively with healthcare providers to keep track of essential lab tests and ensure overall health. SHOW DESCRIPTION Thal Pals: The Alpha Beta Revolution Podcast is intended for patients, caregivers, providers, and the greater community of people who are impacted by Thalassemia.  Each episode, Thal Pals strives to provide listeners with critical education, the latest scientific updates, and voices from the Thalassemia community.   TRANSPARENCY STATEMENT  Thal Pals: The Alpha Beta Revolution Podcast is made possible by Agios Pharmaceuticals Inc. Visit Agios.com to learn more. The following Agios-supported programs are intended for informational and educational purposes only and are not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions. Hosts featured in this episode have been compensated for their time.

Hello! I would love to hear what your fave part of the ep was. Send me a msg by clicking here :)This is episode 53, and today we hear from Joey in Canberra. Joey is a physio and mum to two boys, Bellamy who she very almost had a homebirth with and Avery, who she did birth at home. Joey shares with us her journey with Bellamy and we reflect on why she chose homebirth, even having had what she describes as a positive hospital birth. We also chat about the impact of COVID on pregnancy, labour and her post partum, and the many things she learnt even as a physio, when researching physiological birth. Resources in this ep: Birth Skills by Juju Sundin https://thememo.com.au/products/birth-skills?srsltid=AfmBOoqvWYN5vby3hUbgVLzxcnvNRHGFSmF9Nzn8OAI0_R1aOB04j7SPCub Birth Stool https://www.cubmama.com/Peaut App https://www.peanut-app.io/Support the showConnect with me, Elsie, the host :) www.birthingathome.com.au @birthingathome_apodcast@birthingathome_a.doula birthingathome.apodcast@gmail.com

In this week's episode we'll learn about refining risk stratification in T-cell acute lymphoblastic leukemia, or ALL. After that, we'll discuss a novel gene therapy approach in severe alpha-thalassemia. Investigators describe an innovative mouse model and an effective gene therapy approach, renewing prospects for the development of novel strategies to treat this disease. Finally, we'll hear about how genomic profiling has helped identify subgroups associated with distinct clinical phenotypes and outcomes in the molecular taxonomy of myelodysplastic syndromes, or MDS. Featured Articles NGS-based stratification refines the risk stratification in T-ALL and identifies a very-high-risk subgroup ofpatientsUse of HSC-targeted LNP to generate a mouse model of lethal α-thalassemia and treatment via lentiviralgene therapyMolecular taxonomy of myelodysplastic syndromes and its clinical implications

TSC News TV host Fred Richani interviews Dr. Layal Issa MD about her fantastic work with nonprofit organization Karma-Lebanon, which helps children suffering from cancer, thalassemia, and chronic illnesses, especially in these trying times of war. Donate today to support their cause: https://karma-leb.org/?product=donate-to-karma-lebanon   Note: This interview was filmed prior to the recent attacks on Lebanon. Follow Karma Lebanon online: https://www.instagram.com/karma.lb/ https://www.facebook.com/karmaleb   Karma Lebanon Interview Time Stamps: 00:00 Introducing Dr. Layal Issa of Karma Lebanon charity 00:39 Dr. Layal Issa on Karma Lebanon fundraising campaigns 02:21 Dr. Layal Issa on joining Karma Lebanon, Mariam Younes 03:26 Karma-Lebanon origin story with Mariam Younes 04:24 Dr. Issa explains Thalassemia, treating Lebanese children 07:42 Dr. Issa on challenges Karma-Lebanon faces 10:14 Resources needed to help Lebanese children 12:17 Most prevalent chronic illnesses among Lebanese children 13:26 Why you should donate, volunteer to Karma-Lebanon

On this episode hosts NinaMaria Badalamenti and Dr. Kevin Kuo discuss important lab tests for thalassemia treatment. They focus on hemoglobin, explaining its role in oxygen transportation, the significance of trends over specific numbers, and the differences for transfusion-dependent and non-transfusion-dependent patients. They also introduce ferritin, describing its function, the importance of trends, and the use of MRI for accurate iron measurement. The conversation emphasizes the need for monitoring and understanding lab results in context with patients' overall health and lifestyle.   SHOW DESCRIPTION Thal Pals: The Alpha Beta Revolution Podcast is intended for patients, caregivers, providers, and the greater community of people who are impacted by Thalassemia.  Each episode, Thal Pals strives to provide listeners with critical education, the latest scientific updates, and voices from the Thalassemia community.     TRANSPARENCY STATEMENT  Thal Pals: The Alpha Beta Revolution Podcast is made possible by Agios Pharmaceuticals Inc. Visit Agios.com to learn more. The following Agios-supported programs are intended for informational and educational purposes only and are not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions. Hosts featured in this episode have been compensated for their time.

Today's Episode Charlee reviews chapter 14 from the Pediatric Morning Report book. A premature female neonate is born to a G1P0-1 mother at 24 weeks and 5 days gestation with a birth weight of 769g via spontaneous vaginal delivery after preterm onset of labor. The infant requires immediate endotracheal intubation as she is noted to be markedly pale and edematous. Oxygen saturation is in the 60%–70% range. Apgar scores are 1 and 6 at 1 and 5 minutes, respectively. Today's Host Charlee Quarless is a 3rd year medical student at Ross University. About Dr. Raj Dr Raj is a quadruple board certified physician and associate professor at the University of Southern California. He was a co-host on the TNT series Chasing the Cure with Ann Curry, a regular on the TV Show The Doctors for the past 7 seasons and has a weekly medical segment on ABC news Los Angeles. More from Dr. Raj www.BeyondThePearls.net The Dr. Raj Podcast Dr. Raj on Twitter Dr. Raj on Instagram Want more board review content? USMLE Step 1 Ad-Free Bundle Crush Step 1 Step 2 Secrets Beyond the Pearls The Dr. Raj Podcast Beyond the Pearls Premium USMLE Step 3 Review MedPrepTGo Step 1 Questions Learn more about your ad choices. Visit megaphone.fm/adchoices

On this episode of Thal Pals we're live in Atlanta, Georgia for the 2024 Cooley's Anemia Foundation's 2024 Patient-Family Conference. We assembled a panel moderated by Dr. Kevin Kuo and guest host Shae Ghosh. The panel dove into inspiring stories and practical advice from individuals living with thalassemia. Brian Goff, CEO of Agios Pharmaceuticals, opens with a heartfelt introduction, followed by a panel featuring Pranav Saha, Dr. Zahra Pakbaz, and Robert Mannino. Each shares their experiences balancing thalassemia with their personal and professional lives, emphasizing the importance of prioritizing health, being your own advocate, and following your dreams. The panel also discusses the value of learning from one's journey and from others, fostering a community that encourages thriving despite the challenges of thalassemia.   SHOW DESCRIPTION Thal Pals: The Alpha Beta Revolution Podcast is intended for patients, caregivers, providers, and the greater community of people who are impacted by Thalassemia.  Each episode, Thal Pals strives to provide listeners with critical education, the latest scientific updates, and voices from the Thalassemia community.     TRANSPARENCY STATEMENT  Thal Pals: The Alpha Beta Revolution Podcast is made possible by Agios Pharmaceuticals Inc. Visit Agios.com to learn more. The following Agios-supported programs are intended for informational and educational purposes only and are not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions. Hosts featured in this episode have been compensated for their time.  

Today's VJHemOnc podcast features experts Rabi Hanna, MD, The Cleveland Clinic Taussig Cancer Institute, Cleveland, OH, Subarna Chakravorty, MBBS, MRCPCH,... The post Updates in the treatment of SCD and thalassemia from EHA 2024: key trial updates, challenges with gene therapies & unmet needs appeared first on VJHemOnc.

On this episode of Thal Pals: The Alpha Beta Revolution, hosts NinaMaria Badalementi and Dr. Kevin Kuo dive into the topic of iron overload, a critical issue for patients with thalassemia. They discuss the body's mechanisms in handling iron, the dangers of iron overload due to blood transfusions, and the importance of chelation therapy. Dr. Kuo emphasizes the need for regular monitoring and patient-doctor collaboration, explaining the potential organ damage caused by excess iron. NinaMaria shares insights on managing one's health and the significance of patient education and communication. The episode highlights the various complications of iron overload, the role of liver and heart MRIs in monitoring, and the importance of adhering to chelation therapy to prevent severe health issues.   SHOW DESCRIPTION Thal Pals: The Alpha Beta Revolution Podcast is intended for patients, caregivers, providers, and the greater community of people who are impacted by Thalassemia.  Each episode, Thal Pals strives to provide listeners with critical education, the latest scientific updates, and voices from the Thalassemia community.     TRANSPARENCY STATEMENT  Thal Pals: The Alpha Beta Revolution Podcast is made possible by Agios Pharmaceuticals Inc. Visit Agios.com to learn more. The following Agios-supported programs are intended for informational and educational purposes only and are not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions. Hosts featured in this episode have been compensated for their time.

On this episode of Thal Pals, your host NinaMaria Badalementi, along with special guests Yasmeen and Paris, takes listeners through a detailed discussion about Cooley's Care Walks. We start with Yasmeen and Paris sharing personal experiences with thalassemia, the significance of community, and encouraging participation in Cooley's Care Walks. The episode covers ways to get involved, the impact of fundraising, and the diverse activities surrounding these walks.   SHOW DESCRIPTION Thal Pals: The Alpha Beta Revolution Podcast is intended for patients, caregivers, providers, and the greater community of people who are impacted by Thalassemia.  Each episode, Thal Pals strives to provide listeners with critical education, the latest scientific updates, and voices from the Thalassemia community.     TRANSPARENCY STATEMENT  Thal Pals: The Alpha Beta Revolution Podcast is made possible by Agios Pharmaceuticals Inc. Visit Agios.com to learn more. The following Agios-supported programs are intended for informational and educational purposes only and are not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions. Hosts featured in this episode have been compensated for their time.  

Please visit answersincme.com/VMK860 to participate, download slides and supporting materials, complete the post test, and obtain credit. In this activity, an expert in hematology discusses the use of novel therapies for patients with transfusion-dependent beta thalassemia. Upon completion of this activity, participants should be better able to: Describe the limitations of ongoing transfusions for patients with transfusion-dependent beta thalassemia (TDT); Review the evidence on novel therapies for TDT; and Outline shared decision-making strategies for the potential use of novel therapies for patients with TDT.

On international Thalassemia Day on 8 May 2024, children with the blood disorder, caused when the body doesn't make enough of a protein called haemoglobin, were treated to a special event as they received gifts and entertainment from many sponsors, particularly Nada Jergis, who has been sponsoring this event for many years. Jergis said she appreciated the donation by some people from Australia when she visited recently. Naseem Sadiq attended the event and filed this report.

 President, National Cooley's Anemia FoundationRalph is BACK!!Cooley's Anemia is a Fatal Genetic Blood Disease. The Cooly's Anemia Foundation is working with medical professionals enhancing the quality of life of patients and educating the medical , trait carriers and the public about Cooley's anemia/thalassemia major.“When I was diagnosed, the outlook was grim, a life expectancy into my late teens, early twenties, with many warning me that living a normal life – having a family, working, living very far into my adult years – was not likely, but faith brought me all that and more. And while there are still many mountains a person with thalassemia has to climb, we now are in a position where a well-managed patient can enjoy many of the same things as a person not living with thalassemia. It's a challenge, but I and others like me have learned to never give up. And definitely don't stop believing!”This episode is dedicated to encourage the Parents, Patients & Loved Ones that are learning about, managing & perservering everyday with Cooley's Anemia, the supporters of Thalassemia, Friends, Researchers & Physicians.. In Addition, this Show is a Dedication to the late Patient Ralph A. Cazzetta. He was a Cooley's Patient, a Nurse, Friend & Great Support Peer to Many in their Life Journey thru thriving as a Thal Patient!! History was made in 2022 at the annual board meeting of the Cooley's Anemia Foundation (CAF) when Ralph Colasanti was elected the first person with thalassemia to serve as National President of the Foundation's board of directors. The Foundation, which was started in 1954, is the primary voice for those with thalassemia, a group of genetic disorders, one of which is also called Cooley's anemia. People with severe forms of the disease require lifelong blood transfusions as often as every 2 weeks and often beginning in infancy.“We are very pleased to have reached this historic moment and know that Ralph's talents, skills, knowledge, and expertise will serve him well in this position,” says Peter Chieco, immediate Past National President of CAF. “Of equal importance, being a patient himself will provide a fresh perspective. No matter how deep the connection that I and our previous Presidents have with the thalassemia community, it is not quite the same experience as actually being a person who was born with and has lived with thalassemia for their entire lives.”“The fact that I am able to serve in this capacity speaks to the tremendous efforts of The Cooley's Anemia Foundation throughout the years,” says Ralph Colasanti. “Those that served before me helped propel many advances in the field of thalassemia over the last 20-30 years. Their commitment, with support from our donors, brought forth dedicated clinicians and researchers who are experts in thalassemia, not only advancing our quantity of life but the most important quality of life. These medical advances and the need for a safe blood supply are tirelessly promoted and supported by CAF.Ralph is a financial coach and IT consultant at Holy Angels School. He and his wife are the parents of a son and a daughter and recently welcomed their first grandchild.© 2024 Building Abundant Success!!2024 All Rights ReservedJoin Me on ~ iHeart Media @ https://tinyurl.com/iHeartBASSpot Me on Spotify: https://tinyurl.com/yxuy23baAmazon Music ~ https://tinyurl.com/AmzBASAudacy:  https://tinyurl.com/BASAud

- Ngày Thalassemia thế giới (8/5) năm nay có chủ đề: “Tăng cường phổ cập thông tin và tiếp cận dịch vụ về bệnh tan máu bẩm sinh Thalassemia để góp phần nâng cao chất lượng giống nòi Việt”. Với gần 13 triệu người mang gen bệnh Thalassemia, hơn 20 nghìn người bệnh đang cần được điều trị, khoảng 8 nghìn trẻ sinh ra mắc bệnh cần được điều trị suốt đời, đây thực sự là gánh nặng của mỗi gia đình, xã hội khi người thân, con em mình chẳng may mắc căn bệnh này. Để không còn những nỗi đau mang tên tan máu bẩm sinh Thalassemia, một số cơ sở y tế đã triển khai rộng rãi các xét nghiệm tầm soát nhằm sàng lọc căn bệnh này với các cặp vợ chồng trong độ tuổi sinh sản. Đây cũng là một chủ trương mà ngành y tế đang khuyến khích nhằm loại bỏ căn bệnh nguy hiểm đang có nguy cơ gia tăng tại nước ta. --- Support this podcast: https://podcasters.spotify.com/pod/show/vov1tintuc/support

 President, National Cooley's Anemia FoundationCooley's Anemia is a Fatal Genetic Blood Disease. The Cooly's Anemia Foundation is working with medical professionals enhancing the quality of life of patients and educating the medical , trait carriers and the public about Cooley's anemia/thalassemia major.This episode is dedicated to encourage the Parents, Patients & Loved Ones that are learning about, managing & perservering everyday with Cooley's Anemia, the supporters of Thalassemia, Friends, Researchers & Physicians.. In Addition, this Show is a Dedication to the late Patient Ralph A. Cazzetta. He was a Cooley's Patient, a Nurse, Friend & Great Support Peer to Many in their Life Journey thru thriving as a Thal Patient!! History was made in 2022 at the annual board meeting of the Cooley's Anemia Foundation (CAF) when Ralph Colasanti was elected the first person with thalassemia to serve as National President of the Foundation's board of directors. The Foundation, which was started in 1954, is the primary voice for those with thalassemia, a group of genetic disorders, one of which is also called Cooley's anemia. People with severe forms of the disease require lifelong blood transfusions as often as every 2 weeks and often beginning in infancy.“We are very pleased to have reached this historic moment and know that Ralph's talents, skills, knowledge, and expertise will serve him well in this position,” says Peter Chieco, immediate Past National President of CAF. “Of equal importance, being a patient himself will provide a fresh perspective. No matter how deep the connection that I and our previous Presidents have with the thalassemia community, it is not quite the same experience as actually being a person who was born with and has lived with thalassemia for their entire lives.”“The fact that I am able to serve in this capacity speaks to the tremendous efforts of The Cooley's Anemia Foundation throughout the years,” says Ralph Colasanti. “Those that served before me helped propel many advances in the field of thalassemia over the last 20-30 years. Their commitment, with support from our donors, brought forth dedicated clinicians and researchers who are experts in thalassemia, not only advancing our quantity of life but the most important quality of life. These medical advances and the need for a safe blood supply are tirelessly promoted and supported by CAF.“When I was diagnosed, the outlook was grim, a life expectancy into my late teens, early twenties, with many warning me that living a normal life – having a family, working, living very far into my adult years – was not likely, but faith brought me all that and more. And while there are still many mountains a person with thalassemia has to climb, we now are in a position where a well-managed patient can enjoy many of the same things as a person not living with thalassemia. It's a challenge, but I and others like me have learned to never give up. And definitely don't stop believing!”Ralph is a financial coach and IT consultant at Holy Angels School. He and his wife are the parents of a son and a daughter and recently welcomed their first grandchild.© 2024 Building Abundant Success!!2024 All Rights ReservedJoin Me on ~ iHeart Media @ https://tinyurl.com/iHeartBASSpot Me on Spotify: https://tinyurl.com/yxuy23baAmazon Music ~ https://tinyurl.com/AmzBASAudacy:  https://tinyurl.com/BASAud

Ever wondered if there's more to your fatigue than meets the eye? Join Professor Jonathan Sackier and Dr. Nigel Guest as they guide you through the world of anaemia… from the esoteric to the bleeding obvious.From the basics of red blood cell deficiency to the intricacies of different symptoms, they're here to shed light on this commonly underestimated condition.Repair to anaemia, where Professor Sackier enlightens us as to the various types and their unique characteristics. From bleeding-related anaemia to the complexities of chronic causes and blood disorders, Dr. Guest delves into the diagnostic realm, unveiling the array of methods used to detect anaemia. From comprehensive medical histories to physical examinations and full blood counts, discover the tools that aid in uncovering this silent blood thief.The conversation takes a turn when The Docs stumble upon a rare and blood-curdling case of auto-vampirism, where an individual was found to be consuming their own blood—talk about a blood thirsty situation! Lucky Nigel carries garlic wherever he goes. Well... he smells like he does!They will chat about treatment and management strategies and explore the role of iron supplementation and folic acid during pregnancy, vital for maintaining healthy blood levels and preventing complications. You will hear about some strange cravings caused by anaemia, come might call it rocket science! Or arugula science for our American listeners. Dive deeper into the realm of genetic anomalies with discussions on sickle cell disease, thalassemia, and emerging gene editing techniques. But how are advancements in modern medication reshaping anaemia treatment? You'll find all of this out, and more, in this week's episode.If you want to read more info about this week's episode, head on over to the website where Jonathan goes into more detail here.—--DISCLAIMER: The views and opinions expressed on Join the Docs are those of Dr. Nigel Guest, Jonathan Sackier and other people on our show. Be aware that Join the Docs is not intended to be medical advice, it is for information and entertainment purposes only - please, always take any health concerns to your doctor or other healthcare provider. We respect the privacy of patients and never identify individuals unless they have consented. We may change details, dates, place names and so on to protect privacy. Listening to Join the Docs, interacting on our social media, emailing or writing to us does not establish a doctor patient relationship. To Contact Us: For a deeper dive on this episode's issue, merchandise and exclusive content, head to www.jointhedocs.comFollow us on youtube.com/JoinTheDocs Follow us on instgram.com/JoinTheDocsFollow us on tiktok.com/JoinTheDocsFollow us on facebok.com/JoinTheDocs Follow us on x.com/JoinTheDocs

In this week's episode we'll discuss PAR2-biased signaling in thrombo-inflammation. Then, we'll learn about how hemoglobin levels are linked to survival in transfusion-dependent beta-thalassemia. Finally we'll hear about how etoposide is better than its reputation in primary HLH—hemophagocytic lymphohistiocytosis. Symptomatic patients treated with etoposide have substantially better outcomes as compared to the historical experience.

On this episode, we reintroduce you to NinaMaria Badalamenti as our new co-host of Thal Pals. NinaMaria is a patient advocate who has previously appeared on the show. Alongside Dr. Kevin Kuo, the two discuss what's new in thalassemia.   SHOW DESCRIPTION Thal Pals: The Alpha Beta Revolution Podcast is intended for patients, caregivers, providers, and the greater community of people who are impacted by Thalassemia.  Each episode, Thal Pals strives to provide listeners with critical education, the latest scientific updates, and voices from the Thalassemia community.     TRANSPARENCY STATEMENT  Thal Pals: The Alpha Beta Revolution Podcast is made possible by Agios Pharmaceuticals Inc. Visit Agios.com to learn more. The following Agios-supported programs are intended for informational and educational purposes only and are not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions. Hosts featured in this episode have been compensated for their time.  

In the last decade, the treatment landscape of thalassemia has been transformed with the introduction of novel therapies. With several... The post Key updates in thalassemia at ASH 2023: gene therapies, ongoing trials & the value of precision medicine appeared first on VJHemOnc.

On this episode we're live in Los Angeles, California from the Cooley's Anemia Foundation family conference. Co-hosts Laurice Levine and Ralph Colasanti host a panel of teenagers in conversation about their unique experiences with thalassemia.    To learn more about Cooley's Anemia Foundation, click this link.   SHOW DESCRIPTION Thal Pals: The Alpha Beta Revolution Podcast is intended for patients, caregivers, providers, and the greater community of people who are impacted by Thalassemia.  Each episode, Thal Pals strives to provide listeners with critical education, the latest scientific updates, and voices from the Thalassemia community.     TRANSPARENCY STATEMENT  Thal Pals: The Alpha Beta Revolution Podcast is made possible by Agios Pharmaceuticals Inc. Visit Agios.com to learn more. The following Agios-supported programs are intended for informational and educational purposes only and are not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions. Hosts and guests featured in this episode have been compensated for their time.  

For the free course "ChatGPT4 for Medical Writers and Editors," go to learnAMAstyle.com Visit Nascentmc.com/podcast for detailed show notes and links.         Erdafitinib for Urothelial Carcinoma: The FDA has fully approved erdafitinib (Balversa) for advanced or metastatic urothelial carcinoma with FGFR3 genetic alterations in adults. This follows its initial accelerated approval and is based on the phase 3 THOR trial results, showing improved survival rates and manageable side effects. Erdafitinib reduced death risk by 36% and had a lower treatment discontinuation rate compared to chemotherapy.        TTFields in NSCLC: The FDA is reviewing a premarket approval application for tumor treating fields (TTFields) combined with standard therapies for platinum-resistant non–small cell lung cancer. TTFields, first approved in 2011, disrupt cancer cell division and showed enhanced survival in NSCLC patients when combined with immune checkpoint inhibitors or docetaxel, without increasing systemic toxicities. The FDA's decision is expected in the second half of 2024.        AI-Powered Device to Detect Skin Cancer: The FDA has approved the first AI-powered handheld device by DermaSensor for assisting in skin cancer detection. It uses AI-driven spectroscopy for analyzing skin lesions and is based on a study involving over 1000 patients. While not a primary screening tool, it aids in detecting melanoma and other skin cancers, especially in patients over 40, and requires further validation testing.        Casgevy for Transfusion-Dependent Beta Thalassemia: The FDA has approved Casgevy (exa-cel), developed by Vertex Pharmaceuticals and CRISPR Therapeutics, for treating transfusion-dependent beta-thalassemia. This follows its approval for sickle cell disease and marks the first CRISPR gene-editing technology application for this condition. The approval came ahead of the anticipated date and follows Bluebird Bio's 2022 approval for a similar gene therapy.        HyQvia for CIDP: HyQvia, an immune globulin infusion 10%, has been approved by the FDA for chronic inflammatory demyelinating polyneuropathy (CIDP) in adults. Initially approved for primary immunodeficiency, HyQvia is the only product combining immunoglobulin with hyaluronidase, allowing for monthly subcutaneous infusions. The approval is based on its demonstrated efficacy in preventing neuromuscular disability relapse.        Physicians' Understanding of FDA Approval Process: A national survey reveals that many physicians have limited understanding of the FDA's drug and medical device approval processes. Only 41% of the surveyed physicians reported moderate or better comprehension of the drug approval process. Despite believing in the adequacy of FDA standards, there's a call for more rigorous post-marketing studies and enhanced education on FDA processes to avoid misconceptions and inaccurate patient advice.

歡迎嚟到 搞乜咁科學 GMG Science 第20集！今集嘅主題係『新發現 New in '23』

Thalassemias are very frequently tested on the USMLE exams. In this podcast, I help you understand everything about thalassemias so you’re not stuck mindlessly memorizing details. Definitely helpful for Step 1-3. I also discuss a bunch of mechanistic things that may help you understand some concepts in cardiology. Audio Download

AP correspondent Karen Chammas reports on a new mdeicine approved for Sickle Cell disease in the U.K.

Dr. Kevin Kuo and Laurice Levine talk to the “mother of Thalassemia” Dr. Nica Cappellini on today's show.    SHOW DESCRIPTION Thal Pals: The Alpha Beta Revolution Podcast is intended for patients, caregivers, providers, and the greater community of people who are impacted by Thalassemia.  Each episode, Thal Pals strives to provide listeners with critical education, the latest scientific updates, and voices from the Thalassemia community.     TRANSPARENCY STATEMENT  Thal Pals: The Alpha Beta Revolution Podcast is made possible by Agios Pharmaceuticals Inc. Visit Agios.com to learn more. The following Agios-supported programs are intended for informational and educational purposes only and are not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions. Hosts and guests featured in this episode have been compensated for their time.  

On this episode, we speak with Dr. Androulla Eleftheriou, the Executive Director of the Thalassaemia International Federation as well as Dr. Khaled Musallam, Chief Research Officer at the Burjeel Hospital at Burjeel Medical City in Abu Dhabi, UAE. We discuss the Thalassaemia International Foundation guidelines on non-transfusion dependent thalassemia. SHOW DESCRIPTION Thal Pals: The Alpha Beta Revolution Podcast is intended for patients, caregivers, providers, and the greater community of people who are impacted by Thalassemia.  Each episode, Thal Pals strives to provide listeners with critical education, the latest scientific updates, and voices from the Thalassemia community.   TRANSPARENCY STATEMENT  Thal Pals: The Alpha Beta Revolution Podcast is made possible by Agios Pharmaceuticals Inc. Visit Agios.com to learn more. The following Agios-supported programs are intended for informational and educational purposes only and are not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions. Hosts and guests featured in this episode have been compensated for their time.  

Welcome back to our weekend Cabral HouseCall shows! This is where we answer our community's wellness, weight loss, and anti-aging questions to help people get back on track! Check out today's questions:    Toni: I have low thyroid and osteoarthritis with two TKR. I have a genetic form of anemia called thalassemia minor. Could this be the cause gif my problems! I'm 65 post menopausal. I do s 3/2/2 intermittent fasting and have gif a year. 3 16 hours 2 nomad 2 no fasting I try to get sufficient calories during my eating window. Shall I stop for a couple of weeks and start again?   Anonymous: Hi Dr Cabral, Thank you for all the work you do! I have SIBO and am doing the CBO protocol and will be doing the "killing" phase for the 90 days followed by the 90 day "repair" phase. During both of these phases do we need to remove dairy, gluten & alcohol completely? I have a celebratory event in the later part of the year and was hoping to enjoy 1-2 cocktails, but unsure if this will ruin the entire protocol. Any advice?   Kelsi: hi dr. cabral! thank you i'm advance. ive struggled with mild cystic acne for many years, however, lately ive been getting a couple that somehow turn infected. they get incredibly swollen, have to be lanced and the culture comes back positive for staph infection. i avoid antibiotics at all costs but with staph (as ive listened to every podcast), you've stated this is one occasion that it's necessary…so i do. of course, i take S. bouldarii while on them. i'm just looking for confirmation that i'm on the right path. this is my plan. 21 day detox. CBO protocol / finisher heavy metal detox ive also ordered the stress mood and metabolism test to see my hormone levels. also, am i right to take the antibiotic if i have staph in the future?   Julia: Hi Dr Cabral! Just asking because i have been attempting to take an at home hormone blood test that was purchased from another company- before i discovered you. I want to do the test however i have an iud and have no menstruation in order to track where I'm at in my cycle. I started taking ovulation tests to check my LH in attempt to track my cycle but find it is not consistent. Do your blood tests require tracking cycle? Also any tips on finally testing my self! This stemmed from low libido. Im 34 yr old and feel like Im 70   Stacey: Hello Dr. Cabral I hope you are having such a beautiful and blessed day . I have a question on DNRS brain retraining . What's your opinion on this way of healing ? I recently bought the program and going to start once summer vacation is over with . It's 60 minutes a day dedication for at least 6 months so I'm a little intimidated but I've seen so many healing testimonies on it . What do you think about it ?   Thank you for tuning into today's Cabral HouseCall and be sure to check back tomorrow where we answer more of our community's questions!    - - - Show Notes and Resources: StephenCabral.com/2787 - - - Get a FREE Copy of Dr. Cabral's Book: The Rain Barrel Effect - - - Join the Community & Get Your Questions Answered: CabralSupportGroup.com - - - Dr. Cabral's Most Popular At-Home Lab Tests: > Complete Minerals & Metals Test (Test for mineral imbalances & heavy metal toxicity) - - - > Complete Candida, Metabolic & Vitamins Test (Test for 75 biomarkers including yeast & bacterial gut overgrowth, as well as vitamin levels) - - - > Complete Stress, Mood & Metabolism Test (Discover your complete thyroid, adrenal, hormone, vitamin D & insulin levels) - - - > Complete Food Sensitivity Test (Find out your hidden food sensitivities) - - - > Complete Omega-3 & Inflammation Test (Discover your levels of inflammation related to your omega-6 to omega-3 levels) - - - Get Your Question Answered On An Upcoming HouseCall: StephenCabral.com/askcabral - - - Would You Take 30 Seconds To Rate & Review The Cabral Concept? The best way to help me spread our mission of true natural health is to pass on the good word, and I read and appreciate every review!  

In this week's episode, we'll learn about long-term outcomes with pembrolizumab in relapsed/refractory classical Hodgkin lymphoma. Next, what's behind the accumulation of toxic free alpha-globin in beta-thalassemia? Finally, a road map for managing CAR T cell hematologic toxicity. 

On this episode we're live in Los Angeles, California from the Cooley's Anemia Foundation family conference. Co-hosts Laurice Levine and Ralph Colasanti host a panel of teenagers in conversation about their unique experiences with thalassemia.    To learn more about Cooley's Anemia Foundation, click this link.   SHOW DESCRIPTION Thal Pals: The Alpha Beta Revolution Podcast is intended for patients, caregivers, providers, and the greater community of people who are impacted by Thalassemia.  Each episode, Thal Pals strives to provide listeners with critical education, the latest scientific updates, and voices from the Thalassemia community.     TRANSPARENCY STATEMENT  Thal Pals: The Alpha Beta Revolution Podcast is made possible by Agios Pharmaceuticals Inc. Visit Agios.com to learn more. The following Agios-supported programs are intended for informational and educational purposes only and are not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions. Hosts and guests featured in this episode have been compensated for their time.  

SHOW NOTES FOR PODCAST PLAYERS: On this episode, Dr. Kevin Kuo sits down with Suwit Sumponpan, a medical science liaison working with Agios Pharmaceuticals and professor Vip Viprakasit, M.D. to discuss treating thalassemia internationally. Note: a portion of this interview is conducted in Thai. For the English portion, please see the time in the show notes.   SHOW DESCRIPTION Thal Pals: The Alpha Beta Revolution Podcast is intended for patients, caregivers, providers, and the greater community of people who are impacted by Thalassemia.  Each episode, Thal Pals strives to provide listeners with critical education, the latest scientific updates, and voices from the Thalassemia community.     TRANSPARENCY STATEMENT  Thal Pals: The Alpha Beta Revolution Podcast is made possible by Agios Pharmaceuticals Inc. Visit Agios.com to learn more. The following Agios-supported programs are intended for informational and educational purposes only and are not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions. Hosts and guest featured in this episode have been compensated for their time.

In this week's episode, we'll discuss if some patients with relapsed or refractory primary mediastinal B-cell lymphoma can be cured by checkpoint blockade alone. Next, autologous CAR T cells are highly effective, yet not always feasible in children with relapsed or refractory B-cell precursor acute lymphoblastic leukemia. Lastly, we'll discuss ironing out beta-thalassemia during pregnancy.

On this episode, host Laurice Levine sits down with news producer and thalassemia patient NinaMaria Badalamenti to discuss working a full-time job while managing her disease. SHOW DESCRIPTION Thal Pals: The Alpha Beta Revolution Podcast is intended for patients, caregivers, providers, and the greater community of people who are impacted by Thalassemia.  Each episode, Thal Pals strives to provide listeners with critical education, the latest scientific updates, and voices from the Thalassemia community.   TRANSPARENCY STATEMENT  Thal Pals: The Alpha Beta Revolution Podcast is made possible by Agios Pharmaceuticals Inc. Visit Agios.com to learn more. The following Agios-supported programs are intended for informational and educational purposes only and are not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions. Hosts and guest featured in this episode have been compensated for their time.  

It has long been considered that iron deficiency does not exist in Thalassemia syndromes, including Thalassemia major as well as Trait (Thal minor). But that is incorrect. Recent studies have shown the occurrence of iron deficiency in patients with Beta-Thalassemia Trait. Iron deficiency anemia (IDA) during pregnancy has been associated with an increased risk of low birth weight, preterm delivery, and perinatal mortality and should be treated with iron supplementation in addition to prenatal vitamins. However, patients with Beta-Thalassemias have been considered to be at risk of iron overload due to alterations in function of hepcidin. So, can pregnant women with Beta-Thalassemia Trait, found on hemoglobinopathy screening, take oral iron supplementation for concomitant iron deficiency anemia? That's a big question, and we're going to answer it in this episode!

On this episode, host Laurice Levine speaks with patient advocates Ralph Colasanti, Rucha Shah and NinaMaria Badalamenti about how different generations of patients have dealt with managing their Thalassemia.    SHOW DESCRIPTION Thal Pals: The Alpha Beta Revolution Podcast is intended for patients, caregivers, providers, and the greater community of people who are impacted by Thalassemia.  Each episode, Thal Pals strives to provide listeners with critical education, the latest scientific updates, and voices from the Thalassemia community.     TRANSPARENCY STATEMENT  Thal Pals: The Alpha Beta Revolution Podcast is made possible by Agios Pharmaceuticals Inc. Visit Agios.com to learn more. The following Agios-supported programs are intended for informational and educational purposes only and are not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions. Hosts and guests featured in this episode have been compensated for their time.  

A transcript is available onlineSickle cell disease is an inherited disorder of the blood protein hemoglobin. It has multiple ways to impact the health of someone with the disease — with a hallmark symptom being excruciating chronic pain. The vast majority of people with sickle cell trait and sickle cell disease are Black. Until relatively recently, there has been only one drug to treat the disease.On this week's program, host Seán Collins talks with Dr. Titilope Fasipe, co-director of the Sickle Cell and Thalassemia Program at Texas Children's Cancer and Hematology Center in Houston about advances in both the treatment of sickle cell disease and progress toward a cure..Titilope Fasipe, M.D., Ph.D.Co-DirectorSickle Cell & Thalassemia ProgramTexas Children's Cancer & Hematology CenterAssistant ProfessorPediatrics & Hematology/OncologyBaylor College of MedicineHouston, Texas.To produce this episode, we collected stories from people living with sickle cell disease. These interviews are excerpted in this podcast episode and we invite you to listen to more of the conversations by following the links below. Andre Marcel Harris speaks with his sister Alexis HarrisSijaama Branch talking with producer Scott AcordHeather Avant in conversation with her cousin Dr. Bria Davis   ..To learn more:A full list of resources is available on our websiteSickle Cell & Thalasemmia Program   (Texas Children's)Sickle Cell Disease CoalitionA “Narcotics Contract” for a Patient With Sickle Cell Disease   Pediatrics / (the "care-seeking" article) Building access to care in adult sickle cell disease  Blood AdvancesCure Sickle Cell Initiative  NIHSickle Cell Gene Therapy Education Project   NIHAddressing SCD: A Strategic Plan and Blueprint for Action   NASEMA Review of Sickle Cell Disease (and Reply) JAMAHospital Use and Mortality in Transition-Aged Patients With Sickle Cell Disease  Hospital PediatricsStill seeking balance in opioid management for acute sickle cell disease pain   Pediatric Blood & Cancer..   

On this episode, Dr. Kevin Kuo and Laurice Levine are recording in New Orleans where they take an existential dive into the concept of “disease burden” in Thalassemia. SHOW DESCRIPTION Thal Pals: The Alpha Beta Revolution Podcast is intended for patients, caregivers, providers, and the greater community of people who are impacted by Thalassemia.  Each episode, Thal Pals strives to provide listeners with critical education, the latest scientific updates, and voices from the Thalassemia community.   TRANSPARENCY STATEMENT  Thal Pals: The Alpha Beta Revolution Podcast is made possible by Agios Pharmaceuticals Inc. Visit Agios.com to learn more. The following Agios-supported programs are intended for informational and educational purposes only and are not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions. Hosts and guest featured in this episode have been compensated for their time.  

Giving you information on Thalassemia a disease which is apart of Sickle Cell that don't get talked about. --- Send in a voice message: https://podcasters.spotify.com/pod/show/tevaun-ferris/message

Dr. Kevin Kuo and Laurice Levine talk to the “mother of Thalassemia” Dr. Nica Cappellini on today's show.  SHOW DESCRIPTION Thal Pals: The Alpha Beta Revolution Podcast is intended for patients, caregivers, providers, and the greater community of people who are impacted by Thalassemia.  Each episode, Thal Pals strives to provide listeners with critical education, the latest scientific updates, and voices from the Thalassemia community.   TRANSPARENCY STATEMENT  Thal Pals: The Alpha Beta Revolution Podcast is made possible by Agios Pharmaceuticals Inc. Visit Agios.com to learn more. The following Agios-supported programs are intended for informational and educational purposes only and are not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions. Hosts and guests featured in this episode have been compensated for their time.

Get a free nursing lab values cheat sheet at NURSING.com/63labs   What is the Lab Name for Red Blood Cell (RBC) Lab Values? Red Blood Cell   What is the Lab Abbreviation for Red Blood Cell? RBC   What is Red Blood Cell in terms of Nursing Labs? Red Blood Cells (RBCs) contain hemoglobin which is responsible for oxygen transport throughout the body. RBCs are primarily produced in the bone marrow, they have a life span of 120 days and are destroyed in the spleen and liver. RBC production is regulated by erythropoietin (EPO) which is produced and released from the kidneys.   What is the Normal Range for Red Blood Cell? Male: 4.5 – 5.5 x106/cells/mm3 Female: 4.0 – 4.9 x106/cells/mm3   What are the Indications for Red Blood Cell? Identify: Anemia Blood loss   What would cause Increased Levels of Red Blood Cell? Dehydration Polycythemia Vera Chronic Obstructive Pulmonary Disease (COPD) High altitude Congenital heart disease CorPulmonale Pulmonary fibrosis Thalassemia trait   What would cause Decreased Levels of Red Blood Cell? Chemotherapy Anemia Hemorrhage Hemolysis Hemoglobinopathy Advanced cancer Leukemia Lymphoma Pernicious anemia Rheumatoid disease Organ failure Bone marrow failure Hypervolemia Pregnancy

On today's Episode I have Eve who is a Speech Language Pathologist I befriended in my undergrad years. Eve talks about her upbringing, being a Thalassemia survivor and why she decided to become a Speech Language Pathologist. A speech language Pathologist assess and treat people who have speech, language, voice, and fluency disorders. They also treat clients who have problems swallowing. Eve shares her journey in graduate school (what it entails), highlights of with her students, misconceptions about her career and more. We also talk about anime- how I'm sleeping on My Hero Academia, how grim Demon Slayer can be & more! Thank your for taking your time out to do this episode especially while feeling under the weather! Social Media:The Voncast Show IGVon Shiba MusicWebsite

We're LIVE from New Orleans, Louisiana! Listen to our live podcast panel featuring members of the sickle cell, pyruvate kinase deficiency, and thalassemia communities and leading KOL's in each field. We are proud to introduce the Red Cell Revolution! The Red Cell Revolution is an Agios patient advocacy movement that is driven by a relentless desire to find common ground with these communities and their treaters. SHOW DESCRIPTION Thal Pals: The Alpha Beta Revolution Podcast is intended for patients, caregivers, providers, and the greater community of people who are impacted by Thalassemia.  Each episode, Thal Pals strives to provide listeners with critical education, the latest scientific updates, and voices from the Thalassemia community.   TRANSPARENCY STATEMENT  Thal Pals: The Alpha Beta Revolution Podcast is made possible by Agios Pharmaceuticals Inc. Visit Agios.com to learn more. The following Agios-supported programs are intended for informational and educational purposes only and are not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions. Kevin Kuo, Laurice Levine, Mike Callaghan, Cassandra Trimnell, Teonna Woolford, NinaMaria Badalamenti, Clarisse Lobo, Jill Welle, Tamara Schryver, Rae Blaylark, Ralph Colasanti, Rucha Shah, Alejandra Watson, Biree Andemariam, Charles Jonassaint, Sujit Sheth, Nirmish Shah have been compensated for their time.  

This week's episode will be focusing on alpha thalassemia. We will go over details on the pathophysiology, symptoms, diagnosis and treatment of alpha thalassemia variants.

FLASHBACK ALERT!  #Thalassemia is a family affair. Join us in revisiting one of our favorite #ThalPal episodes “Merula & Dina Steagall: Managing Thalassemia as a Family” Merula, Founder of Brazilian Blood Cancer Society (ABRALE) and Thalassemia major patient, is joined by her daughter Dina as they share their family's journey. Merula is the Founder of Brazilian Blood Cancer Society (ABRALE). https://www.abrale.org.br SHOW DESCRIPTION Thal Pals: The Alpha Beta Revolution Podcast is intended for patients, caregivers, providers, and the greater community of people who are impacted by Thalassemia.  Each episode, Thal Pals strives to provide listeners with critical education, the latest scientific updates, and voices from the Thalassemia community.   TRANSPARENCY STATEMENT  Thal Pals: The Alpha Beta Revolution Podcast is made possible by Agios Pharmaceuticals Inc. Visit Agios.com to learn more. The following Agios-supported programs are intended for informational and educational purposes only and are not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions. Hosts and guest featured in this episode have been compensated for their time. Sponsored by Agios Pharmaceuticals  

This week's episode will be focusing on Beta Thalassemias. We will go over all the quick facts on normal hemoglobin composition, as well as  the diagnosis and treatment of  beta thalassemia minor, intermedia and major.

RARE MAMAS RISING- EPISODE 23 Modeling Rare Advocacy with Thalassemia Advocate & Rare Mama Maria Hadjidemetriou   Maria was born with a rare genetic blood disease called Thalassemia, also known as Cooley's Anemia. Since the age of two, Maria has received two pints of blood every fourteen days. Today, Maria is a mother, a real estate professional, and a fierce Thalassemia advocate speaking around the world and inspiring patients to live their best lives. Maria is a published author in the American Journal of Hematology and currently serves as an Executive Board Member for Cooley's Anemia Foundation and as an Expert Patient Advisor for The Thalassemia International Federation. Most recently, Maria partnered with the global iconic beauty brand Maybelline as a model in the “We Speak” campaign for Disability Month. Maria is a model advocate, and in this episode, she speaks with strength, passion, and faith. She gives valuable insights about growing up with a rare disorder, learning to champion your disease, and living life without limitations or boundaries. She passionately shares ideas on how we can encourage our rare children to do the same!      EPISODE HIGHLIGHTS Maria's childhood and growing up with a rare disease The wisdom Maria's mother passed along to her at a young age How Maria learned to love her disease Maria's goal of turning Thalassemia into a household name Maria's advocacy work and fighting for access and equality Maria's strong faith and God's hand in her life Maria's best advice for other rare mamas   LINKS & RESOURCES MENTIONED   Maria Hadjidemetriou https://www.instagram.com/downtownmomnyc/   Cooley's Anemia Foundation https://www.thalassemia.org/   Thalassemia International Federation https://thalassaemia.org.cy/   American Journal of Hematology https://onlinelibrary.wiley.com/   The Disorder Channel https://www.thedisordercollection.com/     CONNECT WITH NIKKI   Facebook https://www.facebook.com/RareMamas1/ Instagram https://www.instagram.com/Rare_Mamas/ Website https://raremamas.com/ Email info@raremamas.com

On this episode, hosts Dr. Kevin Kuo and Laurice Levine take a deeper dive into their respective journeys with Thalassemia.    SHOW DESCRIPTION Thal Pals: The Alpha Beta Revolution Podcast is intended for patients, caregivers, providers, and the greater community of people who are impacted by Thalassemia.  Each episode, Thal Pals strives to provide listeners with critical education, the latest scientific updates, and voices from the Thalassemia community.     TRANSPARENCY STATEMENT  Thal Pals: The Alpha Beta Revolution Podcast is made possible by Agios Pharmaceuticals Inc. Visit Agios.com to learn more. The following Agios-supported programs are intended for informational and educational purposes only and are not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions. Hosts and guest featured in this episode have been compensated for their time.

Patrick Girondi is an Italian-American singer, composer and pharmaceutical executive/patient advocate. In his book, Patrick Girondi hunts for a cure for Sickle Cell Disease and Thalassemia in the world of gene therapy. Girondi writes: “I'd been strangled, shot at, skated more than twenty arrests, made it through 3 FBI witch-hunts and went from the docks to trading and big money. I would see my son cured." But again, the success of the cure—and the fate of his son—is imperiled, in a world of lab jackets, mysterious deaths, and cut-throat Wall Street banksters. Get Pat's book here: https://amzn.to/3xMUWGwMore about Pat: https://youtu.be/TI3BL4zDcSc help us make more money: https://bit.ly/koncretepatreon danny https://www.instagram.com/jonesdanny https://twitter.com/jonesdanny