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

Patient & Caregiver, Insurance, Infographic, PDF,

October 11, 2023

Guide to Medicare Open Enrollment for 2024

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

Forming a Foundation, Research Ready, Board of Directors, Medical Leadership, Patient Organizations, Membership, PDF, Membership,

Letter Templates for New Nonprofits for Board Members and Medical Advisors

Forming a Foundation, Research Ready, Medical Leadership, Patient Organizations, Membership, PDF, Membership,

How to Research Potential Members of Your Medical/Scientific Advisory Board

Forming a Foundation, Patient & Caregiver, Patient Organizations, Students & Volunteers, Get Involved, Understanding Rare Disease, PDF, Membership,

Finding & Connecting with Others in the Rare Community