Wait, How Do You Spell That? A Rare Disease Podcast
Health & Fitness
In this episode, Ilana has a conversation with Jansen's Foundation president and founder Neena Nizar. Jansen's Disease is one one of the rarest disorders in the world, with Neena reporting only 10 known cases worldwide when she started her foundation in 2017. This interview was recorded in February 2020 at NIH Rare Disease Day. Since then, Neena reports that the COVID-19 pandemic has understandably slowed some of the Jansen's Foundation's work, but that they are moving things back on track soon.
Read about Neena and her family in the New York Times, here: https://www.nytimes.com/2020/07/07/health/rare-diseases.html
Sharing Patient Voices With Elephants and Tea
The Economic Burden of Rare Disease
Helping Patients Achieve Their Potential With HAE Junior
Fighting for Access and Awareness With Dreamsickle Kids
An Editor Shares Her Cystic Fibrosis Story
20 Years of Connections: The Glanzmann's Research Foundation
No Day Wasted: The Adam Settle Story
Ilana's New Journey and Ehlers-Danlos Syndrome
Danny's Dose: Prepare for the Worst and Work Toward the Best
Rare Reflections: How Illustrator J.G. Jones is Bringing Attention to MPN Patients Through Art
A Disease Advocate Gets Personal About Diagnosis and Treatment Denials
Cushing's Syndrome and Service Dogs: Discussing Disease Advocacy With Amy Dahm
Discussing Diagnosis and Access With the EveryLife Foundation for Rare Diseases
Decentralizing Clinical Trials with Harsha Rajasimha from Jeeva Informatic Systems
Why the healthcare system needs to talk about black health disparities
"I found out I had Huntington's Disease through a letter in the mail" talking about HD, Ostenecrosis, and the future with Antonio Maltese
Meditation's relationship with pain, anxiety, and trying not to be sanctamonious
Putting the pieces back together with Lynzi Russell from the Connecting Families with Urea Cycle Disorder Foundation
Young adults changing rare disease legislation, ft. Dan Pezatta from YARR
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