Podcasts about hemlibra

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Best podcasts about hemlibra

Latest podcast episodes about hemlibra

BloodStream
New Music from Trevor Martin and info about Deliver Us, an upcoming documentary

BloodStream

Play Episode Listen Later Apr 25, 2025 84:28


One of our most stacked episodes in a while, featuring a chat and new music with Blood Brother, Trevor Martin. We also have Dr. Richard Lemon on the latest Gene therapy segment discussing the implications of recent hemophilia B gene therapy data. Plus, Allegra Hill and Kimberly Durdin from the only Black-owned birthing center in LA, and the visionary subjects behind our upcoming documentary Deliver Us. AND NYLI's Shanthi Hegde & Eliza Marie VanZweden! Whew!

Art of Boring
Why Invest Outside of the U.S.? The Benefits of EAFE Large Cap | EP176

Art of Boring

Play Episode Listen Later Dec 23, 2024 23:09


In this episode, we discuss Mawer's EAFE large cap portfolio with Ian Turnbull, an equity analyst at Mawer. Ian explores the portfolio's diversification benefits, offering exposure to resilient, high-quality companies in 21 markets such as the Nordics, Switzerland, and Singapore. The team targets proven companies with strong moats and global leadership. Key holdings include Wolters Kluwer, BAE, and Chugai. AI's potential in healthcare R&D is highlighted, though regulatory hurdles persist. The team emphasizes balancing risks, leveraging themes like pharma innovation, defense, electrification, and AI, and addressing geopolitical uncertainties for a resilient, long-term portfolio.   Key Takeaways: • The EAFE Large Cap portfolio provides diversification, mitigating risks like U.S. concentration and valuation fragility. It offers compelling opportunities in smaller, well-performing countries like the Nordics, Switzerland, and Singapore. The team's bottom-up approach targets high-quality companies, emphasizing resilience and long-term potential across 21 diverse markets. • Mawer defines large cap as the top two-thirds of the MSCI EAFE Index ($11B market cap), favoring proven, resilient companies with established moats, economies of scale, and global leadership, tested through cycles and challenges. • Highlighting a few key holdings, Wolters Kluwer's successful shift from print to digital boosted recurring revenue, customer stickiness, and margin expansion, with AI enhancing value creation and growth. • Another top holding, BAE, benefits from stable government funding and high capital returns. With new management and growing defense spending, it offers strong growth potential, especially in Europe, amid rising geopolitical tensions. • Chugai, a top holding in Japan, was once a distributor for Roche but has evolved into a key R&D engine, developing successful treatments like Hemlibra. Its GLP-1 partnership with Eli Lilly offers strong upside potential. • AI in healthcare R&D promises faster drug discovery, optimizing early-stage processes and reducing costs, benefiting companies with strong R&D cultures while still facing regulatory limits in clinical stages. Valuation in pharma is complex, especially with competition in GLP-1s. • The EAFE Large Cap team focuses on creating a resilient portfolio by balancing risks, seeking contradictions between holdings, and ensuring exposure to key themes like pharma innovation, defense, electrification, and AI, while monitoring geopolitical risks and tariffs. Host: Rob Campbell, CFA, Mawer Institutional Portfolio Manager   Guest: Ian Turnbull, CFA, Mawer Equity Analyst   For more details and full transcript visit: https://mawer.com/the-art-of-boring/podcast This episode is available for download anywhere you get your podcasts.   Founded in 1974, Mawer is a privately owned independent investment firm managing assets for institutional and individual investors. Mawer employs over 250 people in Canada, U.S., and Singapore. Visit Mawer at https://www.mawer.com.   Follow us on social:   LinkedIn -  https://www.instagram.com/mawerinvestmentmanagement/   Instagram - https://www.instagram.com/mawerinvestmentmanagement/

Rare Mamas Rising
A Rare Adoption Story with Rare Mama Monica Poynter

Rare Mamas Rising

Play Episode Listen Later Nov 15, 2023 28:47


RARE MAMAS RISING- EPISODE 33  A Rare Adoption Story with Rare Mama Monica Poynter In honor of November National Adoption Awareness Month, guest Monica Poynter shares her incredible rare adoption story. Monica is a proud mother to her sons Tag and Trey and daughter Ophelia. Tag and Trey live with a rare bleeding disorder called hemophilia A, in which the blood does not clot properly. With no family history of the condition, their biological son Tag's diagnosis in 2014 came as a complete shock. Fast-forward to 2020, Monica and her husband Josh grew their family by adopting Trey from an orphanage in China after being inspired by a magazine story about another family who had done the same. The brothers became instantly inseparable, bonded by adoption and their shared condition. Now, the family has another exciting addition with the birth of their daughter, Ophelia. In this episode, Monica shares her family's story of adoption, her journey caring for children living with the same rare condition, and words of inspiration for fellow rare mamas! EPISODE HIGHLIGHTS Tag's Hemophilia A diagnosis  How Monica and Josh rose to the challenge of rare parenting  The road to Trey's adoption  Caring for two children with rare diseases  Tag and Trey's bond  Advice for families interested in adoption   The addition of daughter Ophelia and life today  Monica's best learnings for other rare mamas    LINKS    Kentucky Hemophilia Foundation  https://www.kyhemo.org/index.php    Hemophilia Federation of America https://www.hemophiliafed.org/   Hemlibra® https://www.hemlibra.com/   CONNECT WITH NIKKI   Website https://raremamas.com/ Instagram https://www.instagram.com/Rare_Mamas/ Email info@raremamas.com  

The Top Line
July 15th, 2022

The Top Line

Play Episode Listen Later Jul 15, 2022 29:40


Biopharma watchers have been speculating for weeks about Merck & Co. buying out fellow cancer drugmaker Seagen. But now, the two companies are reportedly nearing a deal. We'll discuss how it could be the largest biopharma deal since 2020—and what might stand in its way. But that's not all. Every year Fierce puts together a special report ranking the highest-paid biopharma CEOs of the year – and this year is no different. We'll cover that, plus this week's headlines.  To learn more about the topics in this episode:  Merck said to near $40B deal to buy Seagen. But will FTC rain on their parade? The 15 highest paid biopharma CEOs of 2021 FDA lets pharmacists prescribe Pfizer's Paxlovid, easing access to the COVID antiviral FDA is letting pharmacists prescribe Pfizer's Paxlovid but won't do the same for Merck's Lagevrio 'Organize. Align': Women in biotech see Roe v. Wade ruling as a call to action SEC charges ex-Mazor exec with insider trading over $1.6B Medtronic buyout Game on, Hemlibra. Novo Nordisk's attempt to snatch Roche's hemophilia crown gets serious The Top Line is produced by senior multimedia producer Teresa Carey with editor-in-chief Tracy Staton, managing editor Querida Anderson and senior editors Annalee Armstrong, Ben Adams, Conor Hale and Eric Sagonowsky. The sound engineer is Caleb Hodgson. The stories are by all our “Fierce” journalists. Like and subscribe wherever you listen to your podcasts. See omnystudio.com/listener for privacy information.

Sister, You're Not Alone
The Importance of Doing Your Research, Making Connections and Learning to Advocate...A Mother's Perspective: A Conversation with Elena

Sister, You're Not Alone

Play Episode Listen Later Jul 8, 2022 38:02


Elena, a mother of a young girl diagnosed with VWD Type 3 severe has become passionate about spreading awareness and sharing information via social media with others. She and her husband live in Paris, France and their daughter is now one of the youngest patients to be using Hemlibra to help treat her bleeding disorder. Listen in as we discuss the importance of seeking out information, not being afraid to ask and question your healthcare providers, struggling and managing with PTSD, and the benefits of finding community for support.  Be sure to follow @zaichee and feel free to connect with Elena through that page.   Music - reCreation by airtone (c) copyright 2019 Licensed under a Creative Commons Attribution (3.0) license. http://dig.ccmixter.org/files/airtone/59721 

BloodStream
Hemlibra in Canada, Amy’s Birds, and Once Upon A Genes’ Effie Parks

BloodStream

Play Episode Listen Later Feb 5, 2021 56:43


Patrick and Amy are joined by Effie Parks from the Once Upon A Gene podcast and Mel Forrest from Season 2 of The Pain Podcast!  They also touch on recent bleeding disorders news and preview next week’s exciting expert guest!   Notes: PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite   CHECK OUT ALL OUR SHOWS: http://bit.ly/AllBloodStreamStuff   ONCE UPON A GENE PODCAST: http://bit.ly/EffiesShow PAIN PODCAST: http://bit.ly/PainPodS2

HemoAware Podcast
Episode 3 | Genentech Hides Hemlibra Death Data from the Hemophilia Community

HemoAware Podcast

Play Episode Listen Later Oct 3, 2020 32:54


In Episode 3 of the HemoAware Podcast, Jesse John Francis Clark talks about how Genentech will no longer give the hemophilia community access to the Hemlibra death data. Hemlibra currently has 44 fatalities and that number has grown every time Genetech publishes a new death report. Find out what Jesse John Francis Clark thinks on episode 3 of the HemoAware Podcast.

Hoosier Health Podcast
Hoosier Health Podcast - Episode 5 - Specialized Care in the Hoosier State

Hoosier Health Podcast

Play Episode Listen Later Aug 27, 2020 28:59


Ep. 5 - We talk with pediatric hematologist, Amy Shapiro of the Indiana Hemophilia and Thrombosis Center (IHTC). Dr. Shapiro, a founder of IHTC, discusses the impact and nationwide status of IHTC as a top center for diagnosis and treating blood disorders. One of Dr. Shapiro's patients and fellow Hoosier, Jacob, talks about living with hemophilia and how participating in a clinical trial for a drug, Hemlibra, has helped treat his condition.

BloodLine Podcast
BloodLine—FVIII Inhibitors: The Next Chapter—Episode 3

BloodLine Podcast

Play Episode Listen Later Sep 9, 2019 38:24


Presenting a NEW BloodLine podcast, “FVIII Inhibitors: The Next Chapter.” In our third episode, we speak to community members and advocates about their hopes for the future of FVIII inhibitor treatment as well as local and nationwide resources available to FVIII inhibitor patients. “FVIII Inhibitors: The Next Chapter” is a three-part podcast series looking at the current and future state of living with hemophilia A with factor VIII inhibitors. Special, huge thanks to our guests: Justin Levesque Dr. Guy Young Sue Geraghty Liz Purvis Eric Lowe Janet Brewer and Benjamin Denman BloodLine—FVIII Inhibitors: The Next Chapter is produced by me, Patrick James Lynch, and Ryan Gielen. Written by Ryan Gielen. Edited by Josh Davis. Produced at BloodStream Media's Los Angeles studio, and mixed by Michael Capuano at Icemen Sound. For more information on the podcast, visit our website at www.BloodLinePod.com. This series was produced by Believe Limited in collaboration with Genentech, the makers of HEMLIBRA® (emicizumab-kxwh). What is HEMLIBRA? HEMLIBRA is a prescription medicine used for routine prophylaxis to prevent or reduce the frequency of bleeding episodes in adults and children, ages newborn and older, with hemophilia A with or without factor VIII inhibitors. What is the most important information I should know about HEMLIBRA? HEMLIBRA increases the potential for your blood to clot. Carefully follow your healthcare provider’s instructions regarding when to use an on-demand bypassing agent or factor VIII, and the dose and schedule to use for breakthrough bleed treatment. HEMLIBRA may cause serious side effects when used with activated prothrombin complex concentrate (aPCC; FEIBA®), including thrombotic microangiopathy (TMA), and blood clots (thrombotic events). If aPCC (FEIBA®) is needed, talk to your healthcare provider in case you feel you need more than 100 U/kg of aPCC (FEIBA®) total. How should I use HEMLIBRA? • Stop (discontinue) prophylactic use of bypassing agents the day before starting HEMLIBRA prophylaxis. • You may continue prophylactic use of factor VIII for the first week of HEMLIBRA prophylaxis. What should I know about lab monitoring? HEMLIBRA may interfere with laboratory tests that measure how well your blood is clotting and may cause a false reading. Talk to your healthcare provider about how this may affect your care. The most common side effects of HEMLIBRA include: redness, tenderness, warmth, or itching at the site of injection; headache; and joint pain. These are not all of the possible side effects of HEMLIBRA. Speak to your healthcare provider for medical advice about side effects. You may report side effects to the FDA at (800) FDA-1088 or www.fda.gov/medwatch. You may also report side effects to Genentech at (888) 835-2555. Please see the HEMLIBRA full Prescribing Information and Medication Guide for Important Safety Information, including Serious Side Effects, here: bit.ly/2kp959s HEMLIBRA® is a registered trademark of Chugai Pharmaceutical Co., Ltd., Tokyo, Japan. The Genentech logo is a registered trademark of Genentech, Inc. © 2019 Genentech USA, Inc. All rights reserved. EMI/053019/0107e 07/19

BloodLine Podcast
BloodLine--FVIII Inhibitors: The Next Chapter---Episode 2

BloodLine Podcast

Play Episode Listen Later Sep 2, 2019 37:30


Presenting a NEW BloodLine podcast, “FVIII Inhibitors: The Next Chapter.” In our second episode, we learn about the ten-year journey to bring HEMLIBRA® (emicizumab-kxwh) to market and take a deep look at the clinical trials of HEMLIBRA. “FVIII Inhibitors: The Next Chapter” is a three-part podcast series looking at the current and future state of living with hemophilia A with factor VIII inhibitors. Special, huge thanks to our guests: Justin Levesque Dr. Guy Young Sue Geraghty Liz Purvis Eric Lowe Janet Brewer and Benjamin Denman BloodLine—FVIII Inhibitors: The Next Chapter is produced by me, Patrick James Lynch, and Ryan Gielen. Written by Ryan Gielen. Edited by Josh Davis. Produced at BloodStream Media's Los Angeles studio, and mixed by Michael Capuano at Icemen Sound. For more information on the podcast, visit our website at www.BloodLinePod.com. This series was produced by Believe Limited in collaboration with Genentech, the makers of HEMLIBRA® (emicizumab-kxwh). What is HEMLIBRA? HEMLIBRA is a prescription medicine used for routine prophylaxis to prevent or reduce the frequency of bleeding episodes in adults and children, ages newborn and older, with hemophilia A with or without factor VIII inhibitors. What is the most important information I should know about HEMLIBRA? HEMLIBRA increases the potential for your blood to clot. Carefully follow your healthcare provider’s instructions regarding when to use an on-demand bypassing agent or factor VIII, and the dose and schedule to use for breakthrough bleed treatment. HEMLIBRA may cause serious side effects when used with activated prothrombin complex concentrate (aPCC; FEIBA®), including thrombotic microangiopathy (TMA), and blood clots (thrombotic events). If aPCC (FEIBA®) is needed, talk to your healthcare provider in case you feel you need more than 100 U/kg of aPCC (FEIBA®) total. How should I use HEMLIBRA? • Stop (discontinue) prophylactic use of bypassing agents the day before starting HEMLIBRA prophylaxis. • You may continue prophylactic use of factor VIII for the first week of HEMLIBRA prophylaxis. What should I know about lab monitoring? HEMLIBRA may interfere with laboratory tests that measure how well your blood is clotting and may cause a false reading. Talk to your healthcare provider about how this may affect your care. The most common side effects of HEMLIBRA include: redness, tenderness, warmth, or itching at the site of injection; headache; and joint pain. These are not all of the possible side effects of HEMLIBRA. Speak to your healthcare provider for medical advice about side effects. You may report side effects to the FDA at (800) FDA-1088 or www.fda.gov/medwatch. You may also report side effects to Genentech at (888) 835-2555. Please see the HEMLIBRA full Prescribing Information and Medication Guide for Important Safety Information, including Serious Side Effects, here: bit.ly/2kp959s HEMLIBRA® is a registered trademark of Chugai Pharmaceutical Co., Ltd., Tokyo, Japan. The Genentech logo is a registered trademark of Genentech, Inc. © 2019 Genentech USA, Inc. All rights reserved. EMI/053019/0107e 07/19

BloodLine Podcast
BloodLine--FVIII Inhibitors: The Next Chapter--Episode 1

BloodLine Podcast

Play Episode Listen Later Aug 26, 2019 39:21


Presenting a NEW BloodLine podcast, “FVIII Inhibitors: The Next Chapter.” In our first episode, we meet patients from around the country who live with hemophilia A with factor VIII inhibitors and hear about their journeys first hand. “FVIII Inhibitors: The Next Chapter” is a three-part podcast series looking at the current and future state of living with hemophilia A with factor VIII inhibitors. Special, huge thanks to our guests: Justin Levesque Dr. Guy Young Sue Geraghty Liz Purvis Eric Lowe Janet Brewer and Benjamin Denman BloodLine—FVIII Inhibitors: The Next Chapter is produced by me, Patrick James Lynch, and Ryan Gielen. Written by Ryan Gielen. Edited by Josh Davis. Produced at BloodStream Media's Los Angeles studio, and mixed by Michael Capuano at Icemen Sound. For more information on the podcast, visit our website at www.BloodLinePod.com. This series was produced by Believe Limited in collaboration with Genentech, the makers of HEMLIBRA® (emicizumab-kxwh). What is HEMLIBRA? HEMLIBRA is a prescription medicine used for routine prophylaxis to prevent or reduce the frequency of bleeding episodes in adults and children, ages newborn and older, with hemophilia A with or without factor VIII inhibitors. What is the most important information I should know about HEMLIBRA? HEMLIBRA increases the potential for your blood to clot. Carefully follow your healthcare provider’s instructions regarding when to use an on-demand bypassing agent or factor VIII, and the dose and schedule to use for breakthrough bleed treatment. HEMLIBRA may cause serious side effects when used with activated prothrombin complex concentrate (aPCC; FEIBA®), including thrombotic microangiopathy (TMA), and blood clots (thrombotic events). If aPCC (FEIBA®) is needed, talk to your healthcare provider in case you feel you need more than 100 U/kg of aPCC (FEIBA®) total. How should I use HEMLIBRA? • Stop (discontinue) prophylactic use of bypassing agents the day before starting HEMLIBRA prophylaxis. • You may continue prophylactic use of factor VIII for the first week of HEMLIBRA prophylaxis. What should I know about lab monitoring? HEMLIBRA may interfere with laboratory tests that measure how well your blood is clotting and may cause a false reading. Talk to your healthcare provider about how this may affect your care. The most common side effects of HEMLIBRA include: redness, tenderness, warmth, or itching at the site of injection; headache; and joint pain. These are not all of the possible side effects of HEMLIBRA. Speak to your healthcare provider for medical advice about side effects. You may report side effects to the FDA at (800) FDA-1088 or www.fda.gov/medwatch. You may also report side effects to Genentech at (888) 835-2555. Please see the HEMLIBRA full Prescribing Information and Medication Guide for Important Safety Information, including Serious Side Effects, here: bit.ly/2kp959s HEMLIBRA® is a registered trademark of Chugai Pharmaceutical Co., Ltd., Tokyo, Japan. The Genentech logo is a registered trademark of Genentech, Inc. © 2019 Genentech USA, Inc. All rights reserved. EMI/053019/0107e 07/19

Blood, Sweat and Smears - A Machaon Diagnostics Podcast
Lab Testing for Patients Taking Hemlibra (Emicizumab-kxwh)

Blood, Sweat and Smears - A Machaon Diagnostics Podcast

Play Episode Listen Later Dec 20, 2018 13:07


patients lab testing hemlibra emicizumab
BloodStream
Ep. 25: June 18, 2018 - w/ Lisa Thibeault

BloodStream

Play Episode Listen Later Jun 18, 2018 68:10


This month on BloodStream, we review major takeaways from World Federation of Hemophilia’s 2018 World Congress, Dakota Rosenfelt shares his journey of life with hemophilia, and we speak with Lisa Thibeault, the nurse coordinator from the Southeastern Ontario Regional Inherited Bleeding Disorders Program in Ontario, Canada, about the progress made in the treatment of women with bleeding disorders. All that and more on Episode 25 of The BloodStream Podcast! Exclusive Sponsor: Shire World Federation of Hemophilia 2018 World Congress World Congress Daily Recaps FDA Clears way for gene therapy BioMarin presents data on BMN 270 Bayer presents insights on HemACTIVE study Novo Nordisk presents data on Rebinyn and presents study data on NovoEight CSL Behring Supports patient advocacy groups through LEAD Program Octapharma presents data on SubQ-8 and presents data on Nuwiq UniQure presents data their AAV5 gene therapy program Bioverativ (a Sanofi company) presents preliminary data for BIVV001 Shire presents data on rVWF in the treatment of people with VWD National Hemophilia Foundation’s Dawn Rotellini elected to WFH’s Board of Directors. Genentech/Roche received Priority Review from the FDA for Hemlibra in Hem A patients without inhibitors. coreHEM publishes Core Outcome Set for Hemophilia Clinical Trials Spark and Pfizer present data on SPK-9001 and the modified process New study looks at Von Willebrand Disease, Von Willebrand Factor, and Aging   Latest Ask The Expert Podcast: Episode 15 featuring Shari Luckey.  Latest Powering Through Podcast: Episode 17 featuring Vanessa Flora, Jason Flora, and Heather Stephenson Share Segment: Dakota Rosenfelt - A Prescription for Success Interview Segment: Lisa Thibeault, RN - Let’s Talk Period, from Queen’s University + partners   BloodFeed: https://www.bloodfeed.com Connect with BloodStream: Email mailbag@bloodstreammedia.com Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream Facebook Page BloodStream Twitter Account Subscribe to BloodStream: iTunes: http://bit.ly/bloodstreamitunes Stitcher: http://bit.ly/bloodstreamstitcher LibSyn: http://bit.ly/bloodstreamlibsyn SoundCloud: http://bit.ly/bloodstreamSC TuneIn: http://bit.ly/bloodstreamtunein Google Play: http://bit.ly/bloodstreamPlay Spotify: http://spoti.fi/2nNPhui

BloodStream
Ep. 23: April 16, 2018 - w/ Bill Patsakos

BloodStream

Play Episode Listen Later Apr 16, 2018 68:46


This month on The BloodStream Podcast, Dr. Steven Pipe joins us to discuss Hemlibra, the recently reported patient deaths, and what this means for our community. FDNY Lieutenant, CVS pharmacist, and FEMA volunteer Bill Patsakos joins us to discuss accounting for the bleeding disorders community during disaster relief, and advocate Maryann May shares her #ibleedtoo story. All that and more on Episode 23 of The BloodStream Podcast! Exclusive Sponsor: Shire Like Segment: What Is Floating?  Sensory Deprivation Benefits // Floatation Locations Share Segment: Maryann May - #ibleedtoo  Comment Segment: National Hemophilia Foundation: Statement From Genentech Regarding Hemlibra Interview Segment: Eyewitness To Destruction from LA Kelley Communications Community News in 60 Seconds: The Ambrosio family of the New York City Hemophilia Chapter celebrated their 10th annual benefit fundraiser CSL Plasma Introduced Miguel Angel Jiminez to children with hemophilia during a PGA Champions Tour event Scientists in Australia have identified a gene-control mechanism that enables some individuals to produce a fetal form of hemoglobin, offsetting the severity of certain blood diseases Precision Develops Better Way of Detecting Levels of Clotting Factor Inhibitors BioMarin Wins Award for Getting Gene Therapy Facility Operational Ahead of Time Many Hemophilia B Patients Have Pain, Depression and Overall Poor Health, Study Finds New Method May Improve Delivery of Targeted Gene Therapies    BloodFeed: https://www.bloodfeed.com Connect with BloodStream: Email mailbag@bloodstreammedia.com Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream Facebook Page BloodStream Twitter Account Subscribe to BloodStream: iTunes: http://bit.ly/bloodstreamitunes Stitcher: http://bit.ly/bloodstreamstitcher LibSyn: http://bit.ly/bloodstreamlibsyn SoundCloud: http://bit.ly/bloodstreamSC TuneIn: http://bit.ly/bloodstreamtunein Google Play: http://bit.ly/bloodstreamPlay Spotify: http://spoti.fi/2nNPhui

BloodStream
Ep. 22: March 19, 2018 - w/ Molly Reeser

BloodStream

Play Episode Listen Later Mar 19, 2018 60:48


This month on The BloodStream Podcast, community member Kevin Krivosik shares his journey toward independence, Camp Casey Founder Molly Reeser joins us to share the camp’s mission and her inspiration for starting it, and we take a look a recent Forbes Magazine piece highlighting one of the many challenges in mental health treatment. And using a combination of written statements, audio recordings, and his own original writing, we say goodbye to community leader Barry Haarde. All that and more on Episode 22 on The BloodStream Podcast!   Exclusive Sponsor: Shire   Hemophilia and Young Adulthood, a new podcast series: BloodLinePod.com   Bleeding Disorders Awareness Month: RedTieCampagin.org   Like Segment: Psychiatrist Shortage Escalates As U.S. Mental Health Needs Grow   Share Segment: Kevin Krivosik - “Third Time’s a Charm” Comment Segment/Remembering Barry Haarde: Remembering the Rain: Barry Haarde   Interview Segment: Camp Casey Founder Molly Reeser   Community News in 60 Seconds: Patient Advocacy Groups Worldwide Plan Events Marking Rare Disease Day (Feb 28) The National Heart, Lung, and Blood Institute to host workshop on Factor VIII Inhibitors May 15-16 in Bethesda, Md.   The UK’s First Genome-Editing Study Is Underway with Phase ½ on SB-FIX   Hemlibra receives approval in Europe   Adynovate receive approval in South Korea   Eloctate show “promise” for use in immune tolerance induction (ITI) therapy.   BloodFeed: https://www.bloodfeed.com Connect with BloodStream: Email mailbag@bloodstreammedia.com Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream Facebook Page BloodStream Twitter Account Subscribe to BloodStream: iTunes: http://bit.ly/bloodstreamitunes Stitcher: http://bit.ly/bloodstreamstitcher LibSyn: http://bit.ly/bloodstreamlibsyn SoundCloud: http://bit.ly/bloodstreamSC TuneIn: http://bit.ly/bloodstreamtunein Google Play: http://bit.ly/bloodstreamPlay Spotify: http://spoti.fi/2nNPhui

BloodStream
Ep. 21: February 19, 2018 - w/ Michael Hargett

BloodStream

Play Episode Listen Later Feb 19, 2018 73:10


This month on The BloodStream Podcast, we discuss how one executive director in China has creatively given hope, dignity and income to her patients, we take you through how to stay fit and healthy while travelling, and we introduce a brand new game here on the BSpod. Plus, Hannah Lutz shares her story of life with Type 3 Von Willebrand Disease and Michael Hargett- the hemophiliac who lost 280 pounds and became the first person with hemophilia to undergo a heart transplant- joins us as today’s interview guest to discuss his remarkable journey. All that and more on Episode 21 of The BloodStream Podcast!   Exclusive Sponsor: Shire Remembering Barry Haarde: Powering Through HFA 2016 Like Segment: How to Fit in Exercise While You Travel   Share Segment: Hannah Lutz - Type Three Girl    Comment Segment: How Paper and Scissors Gave Back Dignity to Hemophilia Patients   Interview Segment: Michael Hargett’s NewHeart4Mike.com website   Community News in 60 Seconds: Registration for NHF’s Washington Days Registration for NHF’s Bleeding Disorders Conference Patient Access Network Foundation Opens Hemophilia Patient Assistance Fund Hemophilia Puts Damper on Patient’s Sex Life and Health Status, Study Reports My Life, Our Future to be Featured in CDC Public Health Webinar NORD Launches 7,000 Mile Rare Movement Rebinyn Now Available for the Treatment of Hemophilia B Sanofi, Facing Threat From Generics, Moves to Buy Hemophilia Drug Makers (Bioverativ) Europe’s CHMP Recommends Approval of Hemlibra to Treat Hemophilia A (with Inhibitors) Shire Granted European Union Marketing Authorization for Adynovi   Parting Shots: #EAHAD2018 on Twitter   Other Links of Interest Project CALLS from Hemophilia Federation of America HTCtour.org- Stop The Bleeding’s Guided Tour of a Hemophilia Treatment Center BloodStreamMedia.com Powering Through Podcast Ask The Expert Podcast   BloodFeed: https://www.bloodfeed.com Connect with BloodStream: Email mailbag@bloodstreammedia.com Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream Facebook Page BloodStream Twitter Account Subscribe to BloodStream: iTunes: http://bit.ly/bloodstreamitunes Stitcher: http://bit.ly/bloodstreamstitcher LibSyn: http://bit.ly/bloodstreamlibsyn SoundCloud: http://bit.ly/bloodstreamSC TuneIn: http://bit.ly/bloodstreamtunein Google Play: http://bit.ly/bloodstreamPlay Spotify: http://spoti.fi/2nNPhui

Ask The Expert - A BloodStream Media Podcast
Ep. 11: Inhibitors and New Therapies - w/ Dr. Guy Young - January 22, 2018

Ask The Expert - A BloodStream Media Podcast

Play Episode Listen Later Jan 21, 2018 44:28


The management of inhibitors continues to be one of the greatest challenges facing researchers, clinicians, and patients with hemophilia. Thankfully we seem to have taken a giant step forward vis-a-vie the introduction of Hemlibra, the first and only subcutaneous treatment option for patients of all ages who have severe hemophilia A and inhibitors. But what exactly is this form of non-factor replacement therapy? How does it work? And what should patients and families impacted by hemophilia and inhibitors be thinking and asking their clinicians about? That’s what we’re here to discuss with this month’s guest, Dr. Guy Young. Welcome to Episode 11 - or our Inhibitors and New Therapies Episode - of the Ask The Expert Podcast!   Disclaimer: The content contained within Ask The Expert is for informational purposes only. Please consult your healthcare provider before making any decisions about treatment.   Have a bleeding disorders-related question you’d like to submit to Ask The Expert? Excellent! You can email it to mailbag@bloodstreammedia.com (Subject: Ask The Expert Question), post it on the wall of our Facebook Page, Facebook.com/BloodStreamMedia or tweet it to us @BloodStreamInfo or @pjlynch (host)   Link to Guy Young Interview Transcript   Connect with BloodStream: BloodStream Facebook Page BloodStream Twitter Account Email mailbag@bloodstreammedia.com Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream Host Patrick James Lynch on Twitter and Instagram.

BloodStream
Ep. 20: January 15, 2018 - w/ Susan Lynch

BloodStream

Play Episode Listen Later Jan 15, 2018 69:53


This month on The BloodStream Podcast, Shire and Roche are locked up in a legal dispute related to Hemlibra, what does this mean and will it impact patients’ ability to receive Hemlibra? We discuss in today’s Comment Segment. A New York Times article examines why the United States spends so much more money on healthcare than any other country in a story presented by Natalie in our Like Segment, and entrepreneur and hemo dad Mark Kenny shares his compelling story and perspective during our Share Segment. Plus Natalie and I sit down with hemo mom (and Patrick’s mom!) Susan Lynch to get her perspective of being introduced to hemophilia in the mid-1980’s and how she navigated being a single parent of two kids with hemophilia during the advent of recombinant products and prophylaxis. All that and more on this Episode 20 of The BloodStream Podcast! Exclusive Sponsor: Shire Like Segment:  Why the US spends so much more money on other nation’s than Healthcare. Share Segment: Mark Kenny: Entrepreneur and Hemo Dad  Comment Segment: Shire and Roche locked in legal dispute over Hemlibra. Links: From Biopharma Dive, “Shire looks to stall Hemlibra impact with court injunction” From Reuters, “Roche, Shire court fight escalates over haemophilia drug” From Shire, “Shire Files Preliminary Injunction Against Roche to Protect Its Intellectual Property”   Parting Shots: Syria allows some patients to leave besieged area Von Willebrand Disease in Dogs: Symptoms, Causes, & Treatments Woman awarded £9m damages for care of son who 'should not have been born'   Other Links of Interest World Federation of Hemophilia’s Government Support in Armenia Chris Bombardier’s Adventures of a Hemophiliac Facebook Page Powering Through Podcast Ask The Expert Podcast   BloodFeed: https://www.bloodfeed.com Connect with BloodStream: Email mailbag@bloodstreammedia.com Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream Facebook Page BloodStream Twitter Account Subscribe to BloodStream: iTunes: http://bit.ly/bloodstreamitunes Stitcher: http://bit.ly/bloodstreamstitcher LibSyn: http://bit.ly/bloodstreamlibsyn SoundCloud: http://bit.ly/bloodstreamSC TuneIn: http://bit.ly/bloodstreamtunein Google Play: http://bit.ly/bloodstreamPlay

BloodStream
Ep. 19: December 18, 2017 - w/ Val Bias

BloodStream

Play Episode Listen Later Dec 18, 2017 87:37


This month on The BloodStream Podcast, Hemlibra is FDA approved and the first non-factor replacement therapy to treat people with hemophilia A (and inhibitors) is now on the market, we’ll discuss that along with other major product development takeaways from the American Society of Hematology’s Annual Meeting held earlier this month during our Comment Segment. Natalie will present a story on how new HIV guidelines are revolutionizing patients lives in the Like Segment, and Community Member Angel Parrett shares her story of living with Factor 1 deficiency in today’s Share Segment. Plus, Patrick sits down with National Hemophilia Foundation CEO Val Bias to review some of the major community highlights from 2017, and to look ahead at what’s to come in 2018. All that and more on Episode 19 of The BloodStream Podcast. Exclusive Sponsor: Shire Like Segment: ‘I don’t feel like I’m a threat anymore.’ New HIV guidelines are changing lives. Share Segment: Angel Parrett: One In A Million: Factor 1 Deficiency  Comment Segment: Hemlibra is FDA Approved & Major Takeaways from #ASH17 Hemlibra is FDA approved for adult and pediatric patients with severe hemophilia A and inhibitors. AAV5-Factor VIII Gene Transfer in Severe Hemophilia A Why Spark Therapeutics Stock Dropped Following #ASH17 Gene Therapy Nearly Eliminates Hemophilia B Bleeding Episodes, Trial Shows Shire, Rani Therapeutics Collaborate on Pill to Treat Hemophilia A. Guy Young, MD, on Recent Revolutions in Hemophilia Treatment   Other Links of Interest Patrick discussing hemophilia and Gene Therapy on BBC’s Open Source (Interview starts at 46:50) Powering Through Podcast Ask The Expert Podcast TreatmentForAll.org Stop The Bleeding! - "Mental Health, or HoCheeCo"   BloodFeed: https://www.bloodfeed.com Connect with BloodStream: Email mailbag@bloodstreammedia.com Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream Facebook Page BloodStream Twitter Account Subscribe to BloodStream: iTunes: http://bit.ly/bloodstreamitunes Stitcher: http://bit.ly/bloodstreamstitcher LibSyn: http://bit.ly/bloodstreamlibsyn SoundCloud: http://bit.ly/bloodstreamSC TuneIn: http://bit.ly/bloodstreamtunein Google Play: http://bit.ly/bloodstreamPlay