RARE-X Information Session

April 12, 2023

This session was recorded April 2023

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, […]

Learn what newborn screenings are, why they are important, how regulations vary by states across the U.S., […]

Cory Lewis was diagnosed with Sickle Cell Disease (SCD) when he was six years old. As an […]

Effie Parks, Community Engagement Coordinator for Global Genes, RARE mom and host of the Once Upon A […]

Updated to include an article about Beyoncé stepping up to get a fan in a wheelchair to […]

During this webinar presented with IN-PART, Karmen Trzupek, Senior Director of Scientific Programs at Global Genes, shared […]

Rare drug development cannot move forward, or move forward quickly without collaboration. The ecosystem works best when […]

Panelists from the 2023 RARE Drug Development Symposium discuss how patient advocacy organizations can be research ready, […]

To answer the question of HOW patient advocates can be involved in rare drug development, we must […]