Share your story! But only if you want to.
Patient WorthyEpisode Description
More Episodes
-
0The MS Poltergeist, feat. Patient Advocate Jennifer Angus
-
0The Bespoke Gene Therapy Consortium's New Regulatory Playbook, feat. The Foundation for the National Institutes of Health and Taylor's Tale
-
0Hemophilia and Axel's Story, feat. Patient Advocate Kristina Robinson
-
0The Road to Resilience and Self-Advocacy, feat. Patient Advocate Kecia J.
-
0Rare Cancer, Finances and Families, feat. Tony Laudadio of the Tony Foundation
-
0The Unmet Need in Rare Disease, feat. Dr. Emil Kakkis of Ultragenyx
-
0The Intersection of Motherhood and Chronic Illness, Feat. aHUS Patient Advocate Taylor Coffman
-
0Going All In On Support, feat. Patient Advocates Kathi and Dave Herzog
-
0Learn About NMOSD feat. Patient Advocates Dr. Maggie Kang and Nell Choi
-
0Building Equity in the Breast Cancer Community, feat. Jasmine Souers of the Missing Pink Breast Cancer Alliance
-
0Von Hippel-Lindau Disease: Meet Patient Advocate Justin Corbin
-
0How to Support the Supporters, feat. The Courageous Parents Network
-
0Working Toward the Future, Feat. GACI Global and Inozyme Pharma
-
0The IRSF: 40 Years of Making Connections
-
0The 2022 Living Rare, Living Stronger Patient and Family Forum
-
0Getting the Support You Need, feat. Cancer Commons
-
0The Importance of Persistence, feat. Patient Advocate Nathan Ehrlich
-
0Forging a Path in Rare Disease Research, Feat. the Myrovlytis Trust
-
0Exciting Rare Disease Developments in the EU, feat. HAE Junior
-
0Preview: Rare Disease Week 2022 feat. The EveryLife Foundation for Rare Diseases
-
0Bridging the Challenges in Cell Therapies, feat. Dr. Brad Heller of Achieve Clinics
-
0The Importance of Getting Involved, Feat. Friedreich‘s Ataxia Advocate Kyle Bryant
-
0The Potential of CAR T-Cell Therapy, Feat. Dr. Robyn Stacy-Humphries
-
0Not Just Surviving, But Thriving With Pheo vs. Fabulous
-
0Hanging Onto Hope in the Face of AML
-
0The Importance of Connection With Jordan‘s Guardian Angels
-
0Awareness and Improvement: Discussing Narcolepsy With a Sleep Medicine Doctor
-
0A Lifetime of Research with Dr. Cannon of the Periodic Paralysis Association
-
0Building the Connections with the SYNGAP Research Fund
-
0Making the "Invisible," Visible With Journalist Karina Sturm
-
0Cure Mito Foundation: The Importance of Patient Registries
-
037 Years of Research With the TSC Alliance
-
0Staying Strong and Pressing On With the Alagille Syndrome Alliance
-
0Living Rare, Living Stronger: NORD Patient and Family Forum
-
0Author Tom Seaman Talks About Adapting to Adversity
-
0Sophie's Hope and GSD1B
-
0Pemphigus and Pemphigoid: Talking Rare Disease Dermatology
-
0The 2021RAREis Scholarship
-
0Narcolepsy: A 20-Year Journey to Diagnosis
-
0Sharing Patient Voices With Elephants and Tea
-
0The Economic Burden of Rare Disease
-
0Helping Patients Achieve Their Potential With HAE Junior
-
0Fighting for Access and Awareness With Dreamsickle Kids
-
0An Editor Shares Her Cystic Fibrosis Story
-
020 Years of Connections: The Glanzmann's Research Foundation
-
0No Day Wasted: The Adam Settle Story
-
0Ilana's New Journey and Ehlers-Danlos Syndrome
-
0Danny's Dose: Prepare for the Worst and Work Toward the Best
-
0Rare Reflections: How Illustrator J.G. Jones is Bringing Attention to MPN Patients Through Art
-
0Rarest of the Rare: Neena Nizar and the Jansen's Foundation
-
0A Disease Advocate Gets Personal About Diagnosis and Treatment Denials
-
0Cushing's Syndrome and Service Dogs: Discussing Disease Advocacy With Amy Dahm
-
0Discussing Diagnosis and Access With the EveryLife Foundation for Rare Diseases
-
0Decentralizing Clinical Trials with Harsha Rajasimha from Jeeva Informatic Systems
-
0Why the healthcare system needs to talk about black health disparities
-
0"I found out I had Huntington's Disease through a letter in the mail" talking about HD, Ostenecrosis, and the future with Antonio Maltese
-
0Meditation's relationship with pain, anxiety, and trying not to be sanctamonious
-
0Putting the pieces back together with Lynzi Russell from the Connecting Families with Urea Cycle Disorder Foundation
-
0Young adults changing rare disease legislation, ft. Dan Pezatta from YARR
-
0When your son has the sixth SYNGAP-1 diagnosis in the world- Ft. Monica Weldon from Bridge the Gap
-
0You're not failing at self-care: staying okay-ish in a pandemic
-
0Not just carriers ft. Taylor Kane from Remember the Girls
-
0PKU is NOT like that time I was vegan!
-
0Adulthood is hard! Ft. Anna from Our Odyssey (Live Recording)
Comments (0)
0/500
New Comments(0)
What do you think of this episode?