Update from the Community: Caregiver Survey
August 3, 2021
Lisa Kadyk & Aditi Desai from CIRM talk about being at Week in RARE
Lisa Kadyk, PhD, Associate Director of Therapeutics, and Aditi Desai, MPH, CPH, Community Outreach Manager, at CIRM, […]Read more
September is Newborn Screening Awareness Month
Learn what newborn screenings are, why they are important, how regulations vary by states across the U.S., […]Read more
Cory Lewis Talks About Advocating For Himself as a Gay Man Living with a Rare Disease
Cory Lewis was diagnosed with Sickle Cell Disease (SCD) when he was six years old. As an […]Read more
Effie Parks Applauds Sensory Shopping Hours for Back to School
Effie Parks, Community Engagement Coordinator for Global Genes, RARE mom and host of the Once Upon A […]Read more
The Not-So-Friendly Skies: Flying When You Have a Rare Disease
Updated to include an article from USA Today (September 18, 2023) Daniel DeFabio. Director of Community Engagement […]Read more
Virtual Partnering Event: IN-PART & Global Genes/RARE-X
During this webinar presented with IN-PART, Karmen Trzupek, Senior Director of Scientific Programs at Global Genes, shared […]Read more
Why Is Collaboration Important in Rare Therapy Development and Research?
Rare drug development cannot move forward, or move forward quickly without collaboration. The ecosystem works best when […]Read more
How Can Patient Organizations Be Research Ready?
Panelists from the 2023 RARE Drug Development Symposium discuss how patient advocacy organizations can be research ready, […]Read more
How Can Patient Advocates Be Involved in Rare Therapy Development?
To answer the question of HOW patient advocates can be involved in rare drug development, we must […]Read more