Podcasts about sickle cell society

Dr Ellie Cannon is joined by John James OBE, Chief Executive of the Sickle Cell Society and Seema Patel, Specialty Care Medical Director at Pfizer UK, to discuss health inequalities and explore what we can learn from the sickle cell community.PP-UNP-GBR-9699 / August 2024

As abolitionist campaigns gained traction in the late 1700s, the population of formerly enslaved people grew. Those who had been enslaved in the British colonies were ‘freed' - at first in dribs and drabs, then all at once via two landmark pieces of legislation in 1807 and 1834. But a new question arose: what would the formerly enslaved do with their freedom? Featuring historian and researcher, Melissa Bennett and Iyamide Thomas, NHS Engagement Lead, Sickle Cell Society, together they curated ‘The Krios of Sierra Leone' exhibitions at the Museum of London. Learn more about your ad choices. Visit podcastchoices.com/adchoices

For our World Sickle Cell Day episode of The G Word, Marie Nugent, Community Manager for the Diverse Data initiative at Genomics England, is joined by John James OBE, CEO of the Sickle Cell Society, and Suzannah Kinsella from the James Lind Alliance. They discuss the new priority setting partnership for sickle cell and genomics, including the longer-term plan to engage communities to create space for learning and trust building, and the importance of the patient-voice in setting research agendas for the use of genomics in sickle cell disease.  By creating a 'top ten' for future research priorities set by patients, their carers, and their healthcare professionals using a trusted methodology, we aim to build trust and understanding across patients, healthcare and research to bring maximum benefit to patients through the newly developing technology that is genomic medicine in the health service. You can read the transcript here: Research-priorities-for-sickle-cell-and-genomics.docx   "It was a few years ago when I met the Chief Executive Office of Genomics England, and we had the first podcast about sickle cell. Why I remember it well is because I was arguing that why isn't there any action being taken by way of research and genomics for sickle cell... And so Marie, it was effectively a call to action. Here today talking about the Diverse Data, which is specific work to help us prioritise what the research priorities for sickle cell should be." - John James, OBE   You can also listen to the first podcast with John James and Chris Wigley.

Philip Udeh was born and raised in London. He graduated from the London School of Economics with a degree in Economics and Business Management. He is the Director of The Ubele Initiative CIC (https://www.linkedin.com/company/20975761/), which is an African diaspora led, infrastructure plus organisation, working to empower Black &Racially Minoritised communities in the UK, to act as catalysts for social and economic change. Philip has also also sat on the board of The Sickle Cell Society (www.sicklecellsociety.org), an organization that empowers individuals with sickle cell disease to live healthy lives and advocates policy change to ensure their access to quality healthcare. Philip is a serial entrepreneur who has created Brain Füd – The Smarter Energy Drink (www.brainfud.co.uk), which is currently distributed in Marks and Spencer. He has also launched his newest CBD brand, where he seeks to naturally solve the problem of sickness and pain. Connect with Philip to follow the journey of this brand. In this episode Alicia and Philip discuss: How sicklecell affected his childhood  How to survive and live normally whilst experience sicklecess  His near death experienced that showed him his passion How to live a full life living with sickleness  Why he had to get a hip replacement in his 20s  Striving through life in constant pain  Why he paid 2.5K for a brainstorm session with a food technologist  The reality of pitching on Dragons Dean  See more about Brain Fud - https://drinkfud.com/  Connect with Philip here - https://www.linkedin.com/in/philip-udeh/

While significant therapeutic advances are underway for inherited blood disorders such as sickle cell disease, hemophilia and β-thalassemia, key challenges remain for the commercialization of these therapies, as well as disparities in access to these treatments and level of care received by patients. In this episode of Axiom Catalyst, we invited John James, CEO of Sickle Cell Society to discuss the impact of sickle celldisease on day-to-day lives of patients living in the UK, as well as current challenges in their clinical journey. We also explore the outreach work done by the Sickle Cell Society including key local initiatives such as the Hackney engagement project, and the translatory impact of their patient support work.

Dr. Dani Gordon the founder of Resilience Clinic is a double board-certified medical doctor, author and world-leading expert in integrative and cannabinoid (yes as in cannabis but the legal kind for medical use by prescription!) medicine. She has over 10 years expertise treating 1000s of patients first in North America and now in the UK,...

To end September Sickle Cell Awareness Month, Rizzy is joined by A Star Music to talk about Sickle cell on #AskTheGoodman. Both warriors touch on managing #SickleCell (SC), what is SC? & the impact on mental health. A Star shares the benefits of therapy. Join our conversation by using hashtag AskTheGoodman on any platform. Rizzy & A Star will respond to all your answers and ideas. Enjoy #sicklecellwarriors #sicklecellanemia #sicklecellanaemia #sicklecelldisease #sicklecellawareness Giving you men's grooming tips, mental health discussions, motivation & real stories from men within our Goodman community. Shop with us Shop our beard oils https://www.goodmanfactory.com/collections/frontpage Shop our face oil https://www.goodmanfactory.com/products/goodmanfaceoil Connect with us Instagram: https://www.instagram.com/goodmanfactory/ Twitter: https://twitter.com/goodmanfactory Facebook: https://www.facebook.com/goodmanfactory Pinterest: https://www.pinterest.co.uk/goodmanfactory #GoodmanFactory #sicklecell

Simon Wright, Managing Director of The Honey Group, a company that he helped to create upon entering the legal sector in 2009. The Honey Group is one of the largest estate planning companies in England and Wales. Since 2016, Simon's company, The Honey Group has recorded over £12 million in legacy donations to U.K charities...

This is Part 1 of a live recording of The Unusual Suspects: Rare disease in everyday medicine which was hosted by M4RD and The Medical Genetics Section of The Royal Society of Medicine in February 2022.In this first part you will hear from Dr Lucy McKay on Rare Disease 101 and Aisha Seedat on The UK Rare Disease's Framework. Aisha lives with mucopolysaccharidosis type IV (Morquio Syndrome) and she reflects on what she would like to see from the Framework. M4RD was able to produce this event thanks to sponsorship by by Alexion Therapeutics and SOBI. Neither company has any editorial control over content and sponsorship does not equate to endorsement. Views expressed in this episode are personal and do not reflect those of the companies involved. LinksThe Royal Society of Medicine event page for The Unusual Suspects 2022The UK MPS SocietyThe Whose Voice is it Anyway report that Aisha contributed to.The Sickle Cell Society and the APPG's No-One's Listening Report  published following inquiry into avoidable deaths and failures of care for sickle cell patients.DeclarationDr Lucy McKay is on the Faculty Steering Committee for Medscape's Pathways for Rare Disease. She has received an honorarium in order to guide and develop this resource.Sponsorship NoticeThis podcast is brought to you by Medics4RareDiseases. M4RD receives sponsorship from commercial companies. In 2022 this includes:Alexion Therapeutics, Amicus Therapeutics UK Ltd, BioMarin, Bionical Emas, Healx, Kyowa Kirin, Orchard Therapeutics and SOBI.These companies have no editorial control over this or any other M4RD content. Sponsorship does not equate to endorsement of companies or products. Views expressed during this podcast are personal and don't reflect those of M4RD sponsors.Go here to find out more about how M4RD works with sponsors. Companies have no editorial control over any of M4RD's activities or content of this podcast.

Dr Sondra Butterworth is from a rare disease family, a carrier of a rare disease and her PhD focused on the quality of life and social support of people living with rare diseases. She talks to Lucy about what it's like to come from a poor, black, rare disease family in Cardiff and how she's turning both her personal and professional experiences into real change for rare disease communities.  Sondra is the founder of RareQoL and the Whose Voice is it Anyway campaign - started because some groups within the rare community feel that their voices go unheard #whosevoiceAlso some RuPaul's Drag Race chat. RuPaul...if you're listening, we're your biggest fans.RareQoL: https://rareqol.co.uk/#WhoseVoice report: https://www.m4rd.org/2021/10/26/whose-voice/Narrative Based Medicine review: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5851389/Rita Charon's Tedx on Narrative Based Medicine: https://www.youtube.com/watch?v=7Uc0jmUkA3ENo-one's Listening report on Sickle Cell Society's website: https://www.sicklecellsociety.org/no-ones-listening/Kimberlé Crenshaw's talk on intersectionality: https://www.ted.com/talks/kimberle_crenshaw_the_urgency_of_intersectionality?language=en

This Black History Month we wanted to take a different approach on the topic by promoting healthcare issues that affect the black community and Sickle Cell is one of them. On today's episode we have John James, a representative from the Sickle Cell Society and two extraordinary women who are inspirational warriors and advocates for Sickle sufferers. Join us and learn how you can make a difference in the community with this disorder that predominantly affects Black People. If you enjoyed this episode subscribe to our podcast so you never miss an episode. If we put a smile on your face, leave us a review and share. If you would like to sign the petition discussed in this episode check https://www.sicklecellsociety.org/?s=petition Join the Give Blood Squad - Contact: olivia.anastasiou@sicklecellsociety.org Become a Sickle Cell community advocate: bit.ly/SLGcommunityadvocate Invite Sickle Cell Society to give a virtual or in person presentation at your workplace, church or group. Contact: tracy.williams@sicklecellsociety.org Share our blood donation awareness resources: https://www.sicklecellsociety.org/resource/blooddonation/ Sing up to be a blood donor: bit.ly/scsgiveblood Get Social: Website: http://coffeemorninglaughter.com Facebook: https://facebook.com/coffeemorninglaughter Instagram: https://instagram.com/coffeemorninglaughter Any questions, feedback or comments email us: smiles@coffeemorninglaughter.com Shilz.1 @shilz.1 Michelle @always.chelle

September is Sickle Cell Awareness month & we talk to Jan!    Sickle Cell Anaemia is an inherited red blood cell disorder in which there aren't enough healthy red blood cells to carry oxygen throughout the body.    Most people affected are of African or Caribbean origin.    Jan gives useful advice for sickle cell sufferers, but also to those who aren't.    PLEASE DONATE BLOOD    For more information: The Sickle Cell Society: https://www.sicklecellsociety.org/ NHS: https://www.nhs.uk/conditions/sickle-cell-disease/    About us: Mama Drama Pod is a community feel podcast where we share our motherhood journey through engaging, informative, and controversial content. Mama Drama Pod spans parenting, lifestyle, relationships. We are unique by offering you the opportunity to grow simultaneously with us as we share experiences on breastfeeding, post-partum, mental health, sex pre / post pregnancy and much more. The pod keeps it fresh by delivering the latest food for thought and trending Tik Tok / Reels. To follow a day in our lives and engage in our weekly polls, join our community on Instagram: https://www.instagram.com/mamadramapod/ Twitter: https://twitter.com/mamadramapod?lang=en You can follow your hosts: https://www.instagram.com/shellsssssssss/  https://youtube.com/user/ShellyBabey1  https://www.instagram.com/racqsreal/  https://www.youtube.com/channel/UCqUQtnm8XzvKqaiSFYgztaw 

"Here we have a condition that has been known medically for hundreds of years, people have received Nobel Prizes for their analysis and understanding of its genetic makeup. Given what is known about sickle cell, genomic research into treatments and cures should be amongst the low hanging fruit within the scientific development." John James, CEO of the Sickle Cell Society and the first Black African-Caribbean Chief Executive in the NHS, believes that it is fundamental to acknowledge that inequalities exist before transformational change can happen across our health services as well as in research. Only then will we start closing the gaps in the differences in healthcare outcomes and treatments for all of the people our NHS serves. This week, Chris and John tackle the challenges of reaching weary ethnic minority communities, the importance of role models, and the difficulties in translating exciting scientific advancements to healthcare professionals who are already under incredible pressure.

In this episode we present Bianka Whynn, who is a BACP registered Psychotherapist and Counsellor. She speaks candidly about what brought her to complete her postgraduate diploma in psychotherapy and counselling and her journey from BSc Psychology at City, University of London to various roles in education, housing and mental health. Bianka also has an inherited blood disorder, Sickle Cell, but a less known form called Sickle Beta Zero Thalassemia. She talks about how she has lived with this condition and how she has learned to accommodate it into her work choices. September is Sickle Cell Awareness month and we are raising money for the Sickle Cell Society and you can find the link to the fundraising page here. Belpw are also some links that you might want to use to learn more about what was discussed in the episode: University of East London's PGDIP Counselling & Psychotherapy Course City, University of London BSc Psychology Course Sickle Cell Society Information on Sickle Beta Zero Thalassemia

Judith Jacob, 1pm-3pm GMT, Concious Radio Judith Jacob (born 13 December 1961) is a British actress best known for her role as the health visitor Carmel Roberts in the BBC soap opera EastEnders, Judith's first appearance on British television was in the BBC series Play for Today (1976). Before her role in EastEnders, she had been a regular cast member in the hospital drama Angels (1979–81) and the sitcom No Problem! (1983–85). Her other television credits include roles in the comedy sketch-show The Real McCoy (1991); The Queen's Nose (1995); Holby City (2003); Doctors (2003); and My Family (2004).

BLOOD: Life Uncut is a four part series that collides diverse perspectives exploring questions about blood. Is Sickle Cell Anaemia a black disease? In the first episode Science Gallery London presenters Femi and Jessie talk to a Haematologist and a Clinical Psychologist; catch up the Sickle Cell Society and Sickle Cell Warrior Chantelle Pierre, and squeeze in the premiere of a new poem by Sabrina Mahfouz. Visit http://apple.co/2fB4Buw for more.

A very special episode on Sickle Cell, tackling the misconceptions and how to spread awareness. Send us your questions and comments, #OJHpod Twitter: twitter.com/_ojharper Naomi on Twitter: twitter.com/naomilacoco Elisha on Instagram: https://www.instagram.com/lishato/ Visit the Sickle Cell Society website: http://www.sicklecellsociety.org/

Tonight, on It's Real Talk Radio, we'll be recognizing Sickle Cell Awareness Month, which is September for those who don't know. Ms. Sha', It's Real Talk Radio co-host, has the Sickle Cell Trait and has a child who has the actual virus which is passed on genetically. Millions of people carry the trait and millions live with the actual illness and it's important to recognize and educate ourselves on this deadly disease, which claims the lives of countless people including Hip Hop legend, Prodigy. Sickle Cell patients live with great discomfort and pain and there is no cure for it. When you have it, you have it for life. Some of you probably have a family member who has this illness and you yourself may carry the trait and not even know it. There is so much to be educated on when it comes to Sickle Cell Awareness and there's no better suited person to learn from than Ms. Sha', because she has been dealing with this disease for years! There are organizations that help and support Sickle Cell patients, including the Sickle Cell Society, the Children's Sickle Cell Foundation and others which we'll get into on the show. So make sure you listen in because there will be a lot of valuable information you can learn and pass on to friends, family and loved ones. It doesn't get much realer than this! Topics like this are what It's Real Talk Radio is all about. Spreading knowledge and making a voice for the people. #ItJustGotReal Call In # 347-838-9540

Patient and clinician perspectives on living with Sickle Cell disease and the importance of a multidisciplinary approach. An estimated 15,000 people in the UK are living with Sickle Cell disease and at least 250,000 are carriers. Dr Elizabeth Rhodes explains the causes and symptoms of the genetic blood disorder, the areas where it is most prevalent and who is affected. One such patient is Khadijat Jose, who describes her experiences growing up in Nigeria and why being a carrier of the disease is an advantage in countries with Malaria. For those with the condition however, each day can bring severe pain often requiring admission to hospital. Dr Oliver Seyfried highlights the life-limiting effects of this pain, especially on young people, and the challenges it poses in all spheres of life. Self-management is therefore hugely important for those with Sickle cell disease, whether the pain experienced is mild or severe. Paul discusses the different approaches taken by the Red Cell Pain Management team at St George’s Hospital with clinical psychologist Dr Jenna Love and specialist physiotherapist Rebecca McLoughlin. Both emphasize the importance of being able to tackle sickle cell pain from an emotional and psychological perspective as well as a physical one. Thanks to progress in medical training and increased awareness, the quality of life for Sickle Cell patients continues to improve. Dr Oliver Seyried and Dr Jenna Love mention the national sickle cell screening programme and parent education, on which more information can be found here: https://phescreening.blog.gov.uk/category/sct/ For more information about Sickle Cell disease visit the Sickle Cell Society website: http://sicklecellsociety.org Contributors * Dr. Elizabeth Rhodes, consultant haematologist at St. George’s Hospital in London * Khadijat Jose, PhD student at Cardiff University *Dr. Oliver Seyfried, consultant in pain medicine and anaesthesia at St. George’s Hospital in London *Dr Jenna Love, clinical psychologist at St George’s Hospital in London * Rebecca McLoughlin, specialist physiotherapist at St George’s Hospital in London First broadcast 31.01.17 #airingpain #painconcern #audioboom #ableradio