Wait, How Do You Spell That? A Rare Disease Podcast
Health & Fitness
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
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
Rarest of the Rare: Neena Nizar and the Jansen's Foundation
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
When your son has the sixth SYNGAP-1 diagnosis in the world- Ft. Monica Weldon from Bridge the Gap
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