Rare Disease Resource Library

Patient & Caregiver, Insurance, Infographic, PDF,

October 11, 2023

Guide to Medicare Open Enrollment for 2024

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

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

Genome Editing 1 – What is genome editing?

Advocates, Medical Professionals, Patient & Caregiver, Researchers, RDCA-DAP, Research & Drug Development, Educational Video, Webinar, Research,

October 27, 2022

What You Need to Know About the Rare Disease Cures Accelerator-Data and Analytics Platform

Medical Professionals, Patient & Caregiver, Researchers, Gene Therapy, Collection, Podcast Episode, Other,

October 20, 2022

“Ungeeking The Speak: Dr Rachel Bailey Talks “Gene Therapy 101” (2021)