How Can Doctors Educate Others About Rare Diseases

by | Oct 26, 2023

  Annie Kennedy, Chief of Policy, Advocacy, and Patient Engagement for EveryLife Foundation for Rare Diseases, gives advice to help doctors understand the cost benefits of diagnosing a rare disease early.       Transcription: One of the things that...

How are Acromegaly Patients Managed?

by | Oct 23, 2023

Monica Gadelha, PhD, Professor of Medicine at the University of Rio De Janeiro discusses symptoms and how symptoms for Acromegaly patients are managed.       Transcription: There are two main problems with managing acromegaly. First, let me define...

Advice For Telling Your Story

by | Oct 19, 2023

Elijah Stacy, author of “A Small If”, founder of Destroy Duchenne, and Capricor Therapeutics Consultant says…” , says “You can’t hold anything back if you’re going to tell a story that’s supposed to help people overcome their suffering”.   ...

Current Myotonic Dystrophy Treatment

by | Oct 18, 2023

Mike Snape, PhD, chief scientific officer at AMO Pharma explains the different methods currently being used to treat and quell the effects of myotonic dystrophy.   Transcription: Currently, patients with myotonic dystrophy have non-pharmacological support. They...