Introducing the PPALS Patient Advocate Program for Rare Diseases
From Grief to Advocacy: Amy Fadden – Rare Disease Advocate | Co-Founder and Vice President Aislinn’s Wish Foundation[…]
Empowering Neuromuscular Disease Management: Insights from the eNMD Congress
Insights from the eNMD Congress on E-Health & Innovation In November, I had the privilege of attending[…]
The Impact of Social Media Information Silos on Rare Disease Patients
The Emergence of Information Cocoons: In the age of social media, the phenomenon of information cocoons, where[…]