Rare Disease Resource Library

Patient & Caregiver, Advocacy, Understanding Rare Disease, PDF, Education,

July 28, 2026

Clinical Trials Frequently Asked Questions

Patient & Caregiver, Advocacy, Understanding Rare Disease, PDF, Education,

April 28, 2026

Glossary of Clinical Research Terms

Advocacy, Insurance, PDF, Policy,

May 12, 2025

Advocacy Priority: Medicaid

Advocates, Medical Professionals, Pediatric, Physician, Researchers, Advocacy, Research & Drug Development, Publication, Medical Affairs, Research,

December 13, 2024

How To Advocate For Rare Disease-Related Policies: A Guide for Professionals Involved in Diagnosis, Care, or Research of Rare Diseases

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

November 15, 2024

Rare Disease Advisory Council 2024 Stakeholder Webinar Recording

Advocates, Fundraising, Patient & Caregiver, Students & Volunteers, Advocacy, Get Involved, Legislative Advocacy, Rare Disease Day,

April 29, 2024

National Volunteer Month Webinar

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

April 14, 2023

Rare Disease Patients and the Inflation Reduction Act

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

Forming a Foundation, Governance, Advocates, Patient Organizations, Advocacy, Membership, PDF, Membership,

Business Plan Template & Example (Print Ready)