Rare Disease Resource Library

Advocacy, Insurance, PDF, Policy,

May 12, 2025

Advocacy Priority: Medicaid

Advocates, Advocacy, Rare Disease Advisory Councils (RDAC), Webinar, Policy,

November 15, 2024

Rare Disease Advisory Council 2024 Stakeholder Webinar Recording

Advocates, Patient & Caregiver, Insurance, Legislative Advocacy, Regulatory, Webinar, Policy,

November 27, 2023

Medicaid Unwinding

Advocates, Patient & Caregiver, Patient Organizations, Advocacy, Legislative Advocacy, Policy,

April 14, 2023

Rare Disease Patients and the Inflation Reduction Act

Advocates, Medical Professionals, Researchers, Students & Volunteers, Rare Disease Advisory Councils (RDAC), Webinar, Policy,

February 7, 2023

RDAC Stakeholders Meeting – 2022

Advocates, Patient & Caregiver, Patient Organizations, Students & Volunteers, Rare Disease Advisory Councils (RDAC), Infographic, PDF, Policy,

January 23, 2023

Rare Disease Advisory Council – One Pager

Advocates, Patient & Caregiver, Patient Organizations, Researchers, Students & Volunteers, Advocacy, RDCA-DAP, Research & Drug Development, Infographic, PDF, Education, Policy,

October 20, 2022

The Five Steps in Drug Development (Spanish version)

Advocates, Patient & Caregiver, Patient Organizations, Researchers, Students & Volunteers, Advocacy, RDCA-DAP, Research & Drug Development, Infographic, PDF, Education, Policy,

The Five Steps in Drug Development

Advocates, Medical Professionals, Researchers, Advocacy, Gene Therapy, Regulatory, Research & Drug Development, Educational Video, Education, Policy, Research,

October 17, 2022

The FDA’s Role in Gene Therapy

Advocates, Medical Professionals, Researchers, Regulatory, Research & Drug Development, PDF, Publication, Policy,

FDA’s Flexibility in Regulating Therapies