Rare Disease Resource Library

Patient Organizations, Patients & Caregivers, General Resources and Activities,

February 26, 2025

Keepin’ It Rare: Let’s Talk Therapy with Dr. Al Freedman

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

February 10, 2025

Social Media Toolkit (en español)

Patient Organizations, Patients & Caregivers, Genetic Testing, Understanding Rare Disease, Educational Video, Education,

October 16, 2024

Why Should I Get Genetic Testing If I Already Have a Diagnosis?

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, 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

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

Genome Editing 3 – How do I participate and what is the role of patient organizations?

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

Genome Editing 2 – What are the safety, ethical and cost concerns

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)