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

Finding & Connecting with Others in the Rare Community

Medical Professionals, Patient & Caregiver, Patient Organizations, Students & Volunteers, Gene Therapy, Educational Video, Education, Research,

October 17, 2022

“Gene Therapy: Your Questions Answered” (2018)

Advocates, Medical Professionals, Patient Organizations, Students & Volunteers, Advocacy, Legislative Advocacy, Research & Drug Development, PDF, Publication, Education, Policy,

Study on Orphan Drug Costs & Use