Wait, How Do You Spell That? A Rare Disease podcast

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The Final Flight of Captain Forrester

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The Final Flight of Captain Forrester | 1. The Mystery of Tiny 05 38:05

11 hari yang lalu38:05

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In late 1972, U.S. Marine Captain Ron Forrester disappeared on a bombing run into North Vietnam. Back home in Texas, his family could only wait and hope. Audio subscribers to Texas Monthly can get early access to episodes of the series, plus exclusive interviews and audio. Visit texasmonthly.com/audio to join. Go to HelloFresh.com/FLIGHT10FM to get 10 Free Meals with a Free Item For Life.…

Wait, How Do You Spell That? A Rare Disease Podcast

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Wait How Do You Spell That? is a rare disease podcast produced by Patient Worthy. We talk about issues affecting people rare and underdiagnosed conditions and interview advocates from across the community. We‘re definitely not doctors, and we can‘t give you medical advice. We‘re just here to chat and learn about the diseases that even doctors can‘t seem to spell. Check out the latest in rare disease news at PatientWorthy.com.

76 episode

#Fitness #Rare Disease #Patient Worthy

Wait, How Do You Spell That? A Rare Disease Podcast

updated 18 hari yang lalu

Beranda serial•Feed

76 episode

#Fitness #Rare Disease #Patient Worthy

Tüm bölümler

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Navigating the Patient's Journey featuring Brenda Snow 57:59

18 hari yang lalu57:59

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Patient Worthy is humbled to speak to Brenda Snow, CEO and Founder of Snow Companies and now the bestselling author of 'Diagnosed: The Essential Guide to Navigating the Patient's Journey'. We discuss Brenda's own journey with Multiple Sclerosis and how she has turned it into a career and guidebook for others facing chronic diagnoses. You can find Brenda's book now at Amazon.com or by going here: Amazon.com : brenda snow book diagnosed And to watch the full interview with Brenda, please visit our YouTube channel here: Wait, How Do You Spell That? - "Diagnosed: The Essential Guide to Navigating the Patient Journey"…

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The Role of AI in Medicine feat. Joe Lennerz, BostonGene 38:33

22 weeks yang lalu38:33

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On this episode of the podcast, we discuss the role of artificial intelligence (AI) in medicine – specifically in the areas of analysis and diagnosis. Our guest, Dr. Joe Lennerz, is the chief scientific officer at BostonGene, an American clinical technology company that studies and produces new diagnostic tools in the areas of oncology and immunology. https://bostongene.com/…

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Spreading PAH Awareness featuring Steve Smith 25:38

27 weeks yang lalu25:38

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In this episode of the podcast we speak to Steve Smith, a patient advocate who is living with Pulmonary Arterial Hypertension (PAH), a rare and progressive condition characterized by narrowing of the blood vessels in the heart and lungs. Steve is a college administrator and avid theater participant who uses his PAH story to connect with others, believing that open communication is key to the patient experience. Hear More About Steve and Other PAH patients: OutnumberPAH.com Editor's Note: Chronic conditions and rare diseases don’t discriminate. Patient Worthy and our partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a story to share, learn more about how your voice can help spread awareness and inspire individuals from all walks of life here: getinvolved.patientworthy.com Outnumber PAH | Living With Pulmonary Arterial Hypertension Together we can outnumber PAH. Find resources for living with pulmonary arterial hypertension and learn from the stories of people in the PAH community.…

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All About Koolen de-Vries Syndrome, feat. Patient Advocate Ashley Point 26:49

31 weeks yang lalu26:49

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In this episode of the podcast we speak to Ashley Point, a patient advocate advocate whose son Davis was diagnosed with Koolen de-Vries Syndrome (KdVS) in 2016. She also serves as the president for both the Koolen de-Vries Syndrome Foundation and My Kool Brother, two non-profits that help to support families living with KdVS through advocacy, research and fundraising. Connect with Ashley Point: Koolen de-Vries Syndrome Foundation - My Kool Brother - "Davis Out of the Unknown" Documentary - Donate Editor's Note: Chronic conditions and rare diseases don’t discriminate. Patient Worthy and our partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a story to share, learn more about how your voice can help spread awareness and inspire individuals from all walks of life here: getinvolved.patientworthy.com…

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PKD and the Gift of Life, feat. Patient Advocate Valen Keefer 40:10

36 weeks yang lalu40:10

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In this episode of the podcast we speak to Valen Keefer, a professional speaker and patient advocate who was diagnosed with polycystic kidney disease (PKD) at age 10. Valen has faced a number of challenges in her journey, including a double organ transplant, and now inspires other PKD and chronic illness patients by sharing her story. Connect with Valen Keefer: Website - Podcast - Facebook - Instagram - X - LinkedIn Editor's Note: Chronic conditions and rare diseases don’t discriminate. Patient Worthy and our partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a story to share, learn more about how your voice can help spread awareness and inspire individuals from all walks of life here: https://shorturl.at/sPV02…

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The Power of Resiliency, Feat. Multiple Myeloma Patient Advocate Keisha Hickson 50:02

40 weeks yang lalu50:02

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In this episode of the podcast, we speak to professional speaker and community advocate Keisha Hickson, who was diagnosed with multiple myeloma in 2016. That’s a rare form of cancer that develops in a type of white blood cell called a plasma cell. We discuss navigating a rare cancer diagnosis, adjusting to a new normal and the importance of resiliency. Connect with Keisha Hickson: Website - Instagram - LinkedIn Editor's Note: Chronic conditions and rare diseases don’t discriminate. Patient Worthy and our partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a story to share, learn more about how your voice can help spread awareness and inspire individuals from all walks of life here: https://shorturl.at/sPV02…

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Epilepsy and Unmet Need, feat. The LGS Foundation and Ovid Therapeutics 42:39

43 weeks yang lalu42:39

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This episode's guests include Dr. Tracy Dixon-Salazar, Executive Director for the Lennox-Gastaut Syndrome (LGS) Foundation, as well as Meg Alexander, Chief Strategy Officer of Ovid Therapeutics. We discuss the treatment landscape for seizure disorders such as LGS and why further research and investment is crucial. Connect with the LGS Foundation: Website - Facebook - X (Twitter) - YouTube - Instagram - LinkedIn Connect with Ovid Therapeutics: Website - LinkedIn - X (Twitter) - Facebook Editor's Note: Chronic conditions and rare diseases don’t discriminate. Patient Worthy and our partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a story to share, learn more about how your voice can help spread awareness and inspire individuals from all walks of life here: https://shorturl.at/sPV02…

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Ewing Sarcoma and the New Normal, feat. Patient Advocate Brandi Benson 19:48

45 weeks yang lalu19:48

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In this episode of the podcast we sit down with Brandi Benson, a U.S. army veteran, author and patient advocate who was diagnosed with Ewing sarcoma in 2008. That’s one of rare family of cancers that develop in bones and the surrounding soft tissues. Brandi shares her story of resilience and survivorship, hoping to inspire others to share their cancer stories story as well. Connect with Brandi: Website - Facebook - Instagram - YouTube - LinkedIn Check out Survivorship Today to hear the stories of other cancer survivors like Brandi. Editor's Note: Chronic conditions and rare diseases don’t discriminate. Patient Worthy and our partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a story to share, learn more about how your voice can help spread awareness and inspire individuals from all walks of life here: https://shorturl.at/sPV02…

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50 Years of Supporting the TSC Community, feat. TSC Alliance President and CEO Kari Rosbeck 33:03

47 weeks yang lalu33:03

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In this episode of the podcast we sit down with Kari Rosbeck, the president and CEO of the TSC Alliance . That’s a nonprofit dedicated to supporting people living with tuberous sclerosis complex and also driving research into promising treatment, among many other things. The TSC Alliance is also celebrating its 50th anniversary this year! Connect with the TSC Alliance: Website - Facebook - Instagram - YouTube - TikTok - LinkedIn - Threads - Inspire Editor's Note: Chronic conditions and rare diseases don’t discriminate. Patient Worthy and our partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a story to share, learn more about how your voice can help spread awareness and inspire individuals from all walks of life here: https://shorturl.at/sPV02…

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Helping Rare Parents Help Themselves, feat. Ronda Thorington, LPC 34:52

49 weeks yang lalu34:52

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In this episode of the podcast we sit down with Ronda Thorington, the mother of child living with mixed connective tissue disease. Ronda is also a licensed professional counselor who specializes in empowering parents of children who are living with a rare or chronic diagnosis. Connect with Ronda: Website - Facebook - Instagram Editor's Note: Chronic conditions and rare diseases don’t discriminate. Patient Worthy and our partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a story to share, learn more about how your voice can help spread awareness and inspire individuals from all walks of life here: https://shorturl.at/sPV02…

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IPF and the Importance of Clinical Trials, feat. Patient Advocate Murray Walz 18:08

51 weeks yang lalu18:08

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In this episode of the podcast we sit down with Murray Walz, a patient advocate who was diagnosed with the progressive lung diseases idiopathic pulmonary fibrosis (IPF) in 2019. Murray discusses the importance of support, clinical trials and why the family factor is crucial for IPF patients. Connect with the Canadian Pulmonary Fibrosis Foundation: Website - Facebook - Instagram - X (Twitter) - YouTube Editor's Note: Chronic conditions and rare diseases don’t discriminate. Patient Worthy and our partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a story to share, learn more about how your voice can help spread awareness and inspire individuals from all walks of life here: https://shorturl.at/sPV02…

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The MS Poltergeist, feat. Patient Advocate Jennifer Angus 43:48

1 year yang lalu43:48

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In this episode of the podcast we talk with Jennifer Angus, a patient advocate and para dressage competitor who was diagnosed with multiple sclerosis in 2014. Jennifer has long been involved with athletics having a history as a skiing instructor and is a big advocate of horseback riding as a way to heal the body and mind. Connect with Jennifer Regarding MS: Website - Instagram - Facebook - X (Twitter) - YouTube Connect with Jennifer Regarding Para Dressage: Instagram Editor's Note: Chronic conditions and rare diseases don’t discriminate. Patient Worthy and our partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a story to share, learn more about how your voice can help spread awareness and inspire individuals from all walks of life here: https://shorturl.at/sPV02…

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The Bespoke Gene Therapy Consortium's New Regulatory Playbook, feat. The Foundation for the National Institutes of Health and Taylor's Tale 36:30

1 year yang lalu36:30

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In this episode of the podcast we talk with Drs. Julie Gerberding and Courtney Silverthorn from the Foundation for the National Institutes of Health (FNIH). They're bringing us updates on the Bespoke Gene Therapy Consortium's new regulatory playbook that is designed to help get certain types of genetic therapies for rare diseases approved and available to patients more quickly. We're also joined by Sharon King, the Co-Founder of Taylor's Tale a non-profit that advocates on behalf of rare disease patients. She talks about why timely development of gene therapies is so important for people like her daughter, who lived with CLN1 disease. Learn more about the FNIH and the BGTC Regulatory Playbook here . Learn more about Taylor's Tale and the ways there are helping rare disease patients here. Editor's Note: Chronic conditions and rare diseases don’t discriminate. Patient Worthy and our partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a story to share, learn more about how your voice can help spread awareness and inspire individuals from all walks of life here: https://shorturl.at/sPV02…

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Hemophilia and Axel's Story, feat. Patient Advocate Kristina Robinson 27:37

1 year yang lalu27:37

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In this episode of the podcast we talk with Kristina Robinson, a patient advocate and mother whose son, Axel, was diagnosed with hemophilia A when he was 10 months old. That’s a rare bleeding disorder, sometimes called “classic hemophilia,” that is characterized by excessive bleeding from cuts, unexplained bruising, joint swelling and more. Since her son was diagnosed, Kristina has been his #1 champion, advocating for hemophilia awareness in her home state and beyond. Keep up with Kristina and Axel on Instagram! Learn more about hemophilia and ways that you can get involved at the New England Hemophilia Association ! Editor's Note: Chronic conditions and rare diseases don’t discriminate. Patient Worthy and our partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a story to share, learn more about how your voice can help spread awareness and inspire individuals from all walks of life here: https://shorturl.at/sPV02…

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The Road to Resilience and Self-Advocacy, feat. Patient Advocate Kecia J. 38:13

1 year yang lalu38:13

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This episode features Kecia Johnson, an author, music industry veteran and motivational speaker who was diagnosed with HIV/AIDS in her early 20s, and also with a rare form of stage-3 colorectal cancer at age 35. Kecia has been an outspoken patient advocate who has appeared in OutSmart Magazine, Shoutout Atlanta, many different podcasts and also a Walgreen’s ad campaign. Keep up with Kecia: https://linktr.ee/KeciaJ Chronic conditions and rare diseases don’t discriminate. Patient Worthy and our partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a story to share, learn more about how your voice can help spread awareness and inspire individuals from all walks of life here: https://shorturl.at/sPV02…

Wait, How Do You Spell That? A Rare Disease Podcast

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Rare Cancer, Finances and Families, feat. Tony Laudadio of the Tony Foundation 48:39

1 year yang lalu48:39

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In this episode of the podcast, we speak with Tony Laudadio, an oncology patient advocate who was diagnosed with renal cell carcinoma and oligodendroglioma, a type of rare brain cancer. In the years after his remission, Tony also started the Tony Foundation, a non-profit that helps to support families impacted by all types of cancers with crucial financial aid. Topics Discussed: The importance of a support system, acute diagnoses and financial burden, and more! If you'd like to learn more about the Tony Foundation and the ways in which they are supporting cancer patients, check out their website here . Editor's Note: Chronic conditions and rare diseases don’t discriminate. Patient Worthy and its partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a oncology journey to share, reach out here to learn more about how your voice can help spread awareness and inspire individuals from all walks of life.…

Wait, How Do You Spell That? A Rare Disease Podcast

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The Unmet Need in Rare Disease, feat. Dr. Emil Kakkis of Ultragenyx 25:12

1 year yang lalu25:12

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In this episode, we speak with Dr. Emil Kakkis, a physician and scientist who has spent more than 30 years helping to advance research, treatment and policy for rare disease patients. He is also the founder of both the EveryLife Foundation for Rare Diseases and Ultragenyx , a life sciences company dedicated to developing innovative treatments for rare and ultra-rare diseases. Topics discussed: advanced tech and the promise it holds, the key factors in advancing rare therapies, issues standing in the way of treatment access and more. If you'd like to pick up a copy of Dr. Kakkis' book, you can find it at Impositivity Media or at Amazon . You can learn more about Rare Disease Week here . Editor’s Note: Chronic conditions and rare diseases don’t discriminate. Patient Worthy and its partners are interested in amplifying the voices of those from all identities and backgrounds. If you have an aHUS journey to share or want to connect with others about chronic illness, reach out here to learn more about how your voice can help spread awareness and inspire individuals from all walks of life.…

Wait, How Do You Spell That? A Rare Disease Podcast

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The Intersection of Motherhood and Chronic Illness, Feat. aHUS Patient Advocate Taylor Coffman 43:28

1 year yang lalu43:28

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On this episode of the podcast, we discuss atypical hemolytic-uremic syndrome, also known as aHUS -- a rare disorder characterized by low levels of blood platelets and blood clotting in the small blood vessels of the body. We're joined by Taylor Coffman, whose diagnosis with aHUS during pregnancy inspired her to work as a patient advocate helping those with life-changing diagnoses to process their new reality. Topics Discussed: adapting to a new chronic illness, the intersection of disability and motherhood, learning to be a patient and more. Connect With Taylor Rare Disease Girl Substack Instagram TikTok Editor’s Note: Chronic conditions and rare diseases don’t discriminate. Patient Worthy and its partners are interested in amplifying the voices of those from all identities and backgrounds. If you have an aHUS journey to share or want to connect with others about chronic illness, reach out here to learn more about how your voice can help spread awareness and inspire individuals from all walks of life.…

Wait, How Do You Spell That? A Rare Disease Podcast

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Going All In On Support, feat. Patient Advocates Kathi and Dave Herzog 24:26

1 year yang lalu24:26

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In observance of Alzheimer's Disease Awareness month, we sit down with patient advocate Kathi Herzog -- who was diagnosed with moderate Alzheimer's earlier this year. While not a rare condition, Alzheimer's research has informed the search for treatments in rare neurodegenerative conditions and Kathi's journey to diagosis will probably sound very familiar to the rare community. Kathi's husband, Dave, also joins us to talk about their journey together and why caregivers need support as well. If you'd to learn more about Alzheimer's Disease, check out the resources here . If you'd like to get in touch with Kathi, email her here: kathleenherzog4@gmail.com If you'd like to get in touch with Dave, email him here: daveherzog4@gmail.com Editor’s Note: Chronic conditions and rare diseases don’t discriminate. Patient Worthy and its partners are interested in amplifying the voices of those from all identities and backgrounds. If you have an Alzheimer's Disease journey to share, reach out here to learn more about how your voice can help spread awareness and inspire individuals from all walks of life.…

Wait, How Do You Spell That? A Rare Disease Podcast

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Learn About NMOSD feat. Patient Advocates Dr. Maggie Kang and Nell Choi 25:27

1 year yang lalu25:27

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In this episode of the podcast we discuss neuromyelitis optica spectrum disease (NMOSD), a rare autoimmune disease that effects central nervous system function and can result in symptoms such as pain, vision loss, limb weakness and numbness. Joining us are Dr. Maggie Kang and Nell Choi, mother and daughter patient advocates who talk about NMOSD and their experiences since Nell was diagnosed at a young age. To learn more about NMOSD go here: NMOSD at the National Organization for Rare Disorders You can pick up a copy of Nell's book here: My Hospital Story - Amazon Learn About Dr. Kang's work supporting the wellbeing of parents of children with rare conditions here: MaggieKangMD.com…

Wait, How Do You Spell That? A Rare Disease Podcast

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Building Equity in the Breast Cancer Community, feat. Jasmine Souers of the Missing Pink Breast Cancer Alliance 24:23

2 years yang lalu24:23

24:23

For Breast Cancer Awareness month, in this episode we're speaking with Jasmine Souers, the president and CEO of the Missing Pink Breast Cancer Alliance about some topics that aren't often covered in mainstream oncology. We discuss the individual genotypes, treatment factors and other considerations that make each case of breast cancer a "rare" experience. We also talk about the experiences of people of color, the "spectrum of need" in patients, and how to build equity in the breast cancer community. If you'd like to learn more about the Missing Pink Breast Cancer Alliance and the work they're doing in the community, you can check out their website at TheMissingPink.org . Also be sure to pick up a copy of their newly-launched More Life Magazine for breast cancer patient stories, perspectives, resources and more! Get your copy today at MoreLifeMag.com. ### Chronic conditions and rare diseases don't discriminate. Patient Worthy and its partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a breast cancer journey to share, reach out to learn more about how your voice can help spread awareness and inspire individuals from all walks of life .…

Wait, How Do You Spell That? A Rare Disease Podcast

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Von Hippel-Lindau Disease: Meet Patient Advocate Justin Corbin 8:13

2 years yang lalu8:13

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Patient Worthy's award-winning podcast is back! In this episode, we discuss Von Hippel-Lindau Disease. That's a genetic condition that causes constant tumor growth, commonly in the eyes, spine, brain and kidneys. Patient advocate Justin Corbin shares his diagnosis and treatment journey, which stretches from the 1990s today. Read more about Justin's journey in this interview over at PatientWorthy.com . To learn more about Von Hippel-Lindau Disease, check out the VHL Alliance . Chronic conditions and rare diseases don't discriminate. Patient Worthy and its partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a journey to share, reach out to learn more about how your voice can help spread awareness and inspire individuals from all walks of life .…

Wait, How Do You Spell That? A Rare Disease Podcast

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How to Support the Supporters, feat. The Courageous Parents Network 28:26

2 years yang lalu28:26

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We speak to Jennifer and Chrissy from the Couraeous Parents Network, one of Patient Worthy's newest partners. CPN is a non-profit organization and educational platform that orients, empowers and accompanies families and providers caring for children with serious illness. Learn more about what they do and how you can get involved over at their website, CourageousParentsNetwork.org . Be sure to follow CPN on Facebook !…

Wait, How Do You Spell That? A Rare Disease Podcast

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Working Toward the Future, Feat. GACI Global and Inozyme Pharma 22:18

3 years yang lalu22:18

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On today's episode, we sit down with two of the co-founders of GACI Global, a nonprofit organization centered around families affected by Generalized Arterial Calcification of Infancy. We also speak with the Vice President of Physician and Patient Strategies at Inozyme Pharma, which is pursuing novel therapeutics for the treatment of abnormal mineralization disorders such as GACI. Learn why close cooperation is so important in the development of treatments for rare conditions and why newborn screening is absolutely vital. Important Links GACI Global Homepage GACI Global Worldwide Walk 2022 Inozyme Pharma Homepage Inozyme Patient Resources Inozyme Clinical Trial Information…

Wait, How Do You Spell That? A Rare Disease Podcast

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The IRSF: 40 Years of Making Connections 26:46

3 years yang lalu26:46

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Thank you for sticking with us while we took an unexpected break! We now return to our regular schedule of helping to share the stories of the rare disease community. In this week's episode, we sit down with Melissa Kennedy and Dominique Pichard of the International Rett Syndrome Foundation (IRSF). To learn more about Rett Syndrome and see how you can get involved, visit RettSyndrome.org.…

Wait, How Do You Spell That? A Rare Disease Podcast

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The 2022 Living Rare, Living Stronger Patient and Family Forum 18:55

3 years yang lalu18:55

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In this episode, we sit down with Tiffany Sammons and Pam Mace from our partners over at NORD to preview the upcoming Living Rare, Living Stronger Patient and Family Forum. This exciting yearly event brings together patient advocates and their families from around the world. Learn more about the Patient and Family Forum, taking place June 26 in Cleveland, Ohio, here. Follow Nord on social media: Facebook Twitter Instagram LinkedIn…

Wait, How Do You Spell That? A Rare Disease Podcast

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Getting the Support You Need, feat. Cancer Commons 16:29

3 years yang lalu16:29

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In this episode, we speak with Shelley Frisbie and Dr. Kaumudi Bhawe of Cancer Commons, a non-profit dedicated to providing assistance to advanced cancer patients. We discuss why having a dedicated support team can be so helpful and why every cancer diagnosis is unique. To learn more about Cancer Commons, visit their website here . You can also connect with them on Facebook , Twitter and LinkedIn .…

Wait, How Do You Spell That? A Rare Disease Podcast

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The Importance of Persistence, feat. Patient Advocate Nathan Ehrlich 20:37

3 years yang lalu20:37

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In this episode, we speak with Patient Advocate Nathan Ehrlich about SAMD9L mutations and their connection to a range of conditions, including bone marrow failure disorders, cytopenia and ataxia-pancytopenia syndrome. If you'd like to get in touch with Nathan, you can email him at nathan.ehrlich@gmail.com . You can also check out the SAMD9L mutations Facebook support page here .…

Wait, How Do You Spell That? A Rare Disease Podcast

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Forging a Path in Rare Disease Research, Feat. the Myrovlytis Trust 18:48

3 years yang lalu18:48

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In this episode of the podcast, we meet with our partners at the Myrovlytis Trust to talk about their work in rare disease research. Keep up with the Myrovlytis Trust and their new initiatives here: Myrovlytis Trust www.myrovlytistrust.org LinkedIn: https://www.linkedin.com/company/the-myrovlytis-trust Twitter: @Myrovlytis BHD Foundation www.bhdsyndrome.org Facebook: https://www.facebook.com/birthoggdube/ Twitter: @BHD_Foundation BHD Registry: https://birt.healthie.net/register Osteosarcoma Now www.osteosarcomanow.org Twitter: @OsteosarcomaNow…

Wait, How Do You Spell That? A Rare Disease Podcast

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Exciting Rare Disease Developments in the EU, feat. HAE Junior 18:54

3 years yang lalu18:54

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Hello and Happy Rare Disease Day! This week, we discuss some exciting developments concerning rare disease awareness in the EU, specifically in the Czech Republic, with Camelia Isaic and Anežka Dašková of HAE Junior. To learn more about HAE Junior, click here . More information about HAE Junior art exhibition can be found here . Read more about the EU Council Presidency's focus on rare disease for 2022-2022 here . And keep up with Anežka's YouTube Channel here.…

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