Rare Disease Resource Library

Advocates, Patient Organizations, Patients & Caregivers, Students & Volunteers, Rare Disease Day, Tools for Social Media, Community Engagement,

February 10, 2025

Social Media Toolkit (en español)

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, 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, Patient & Caregiver, Patient Organizations, Students & Volunteers, Other,

March 13, 2023

NORD Overview

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, Medical Professionals, Patient & Caregiver, Patient Organizations, Researchers, Gene Therapy, Collection, Educational Video,

November 3, 2022

Genome Editing 4 – The approval process