Policy expert Paul Melmeyer breaks down what the current NIH funding decisions (in late Jan 2026) could mean for research momentum and patients.
All tagged advocacy
#372 Fighting for Time: Hunter Syndrome, Gene Therapy & Urgent Advocacy
Kristin McKay, Executive Director of Project Alive, is dedicated to accelerating treatments, expanding care, and supporting families affected by Hunter Syndrome, a disease that impacted her brother and now her son.
#371 Growing Old Too Fast: A Mother’s Fight for Cockayne Syndrome Advocacy
Geana Dyer, BS, RN, the Founder of the Cockayne Syndrome Foundation shares her experience parenting 5-year-old Ronin, filmed at the New England Regional Genetics Group (NERGG) conference.
#356 From Statehouse to Capitol Hill: A Guide to Effective Advocacy for Rare Diseases
The Rare Disease Diversity Coalition’s Jenifer Waldrop shares her insider strategies on advancing health equity for rare diseases through advocacy, partnerships, and policy change.
#57 Georgia Hurst on Lynch Syndrome
Patient advocate talks about her hereditary cancer syndrome and offers her expertise and experience.