Track 2: Patient Advocacy An Update on Federal Legislation
September 11, 2020
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
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
How 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 more
CEO 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