Day 1: Track 4, Rare Idiopathic Disorders, Jeanette McCarthy, M.P.H., Ph.D., Caroline Loewyy
September 11, 2020
Related
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 moreSeptember is Newborn Screening Awareness Month
Learn what newborn screenings are, why they are important, how regulations vary by states across the U.S., […]
Read moreThe Not-So-Friendly Skies: Flying When You Have a Rare Disease
Updated to include an article about Beyoncé stepping up to get a fan in a wheelchair to […]
Read moreVirtual 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 moreWhy 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 moreHow Can Patient Organizations Be Research Ready?
Panelists from the 2023 RARE Drug Development Symposium discuss how patient advocacy organizations can be research ready, […]
Read moreHow 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 moreHow Does Global Genes Support Advocates Looking to Expand Research Programs?
Today’s rare disease advocates are on the forefront of drug development – whether in fundraising, raising awareness, […]
Read moreCEO Charlene Son Rigby Talks Drug Development and the Rare Research Roadmap
Charlene Son Rigby, CEO of Global Genes, talks about rare drug development, how patient advocates can contribute […]
Read more