Deals 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
Diagnosis 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
Diagnosis The 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 more
Drug Development 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
Diagnosis 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
Diagnosis 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
Diagnosis 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
Diagnosis 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
Diagnosis 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
