Resource Library

Rare Disease Day

Proclamation Toolkit – All Municipalities

NORD Financials

Published November 4, 2022

2021 Form 990

NORD Financials

Published November 4, 2022

2021 Annual Report

Gene Therapy

Genome Editing 4 – The approval process

Gene Therapy

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

Gene Therapy

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

Gene Therapy

Genome Editing 1 – What is genome editing?

RDCA-DAP, Research & Drug Development

Published May 6, 2020

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

Gene Therapy

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

Research & Drug Development, Understanding Rare Disease

2015 Neurological Rare Disease Special Report

Advocacy, RDCA-DAP, Research & Drug Development

The Five Steps in Drug Development (Spanish version)

Advocacy, RDCA-DAP, Research & Drug Development

The Five Steps in Drug Development

Membership

Letter Templates for New Nonprofits for Board Members and Medical Advisors

Membership

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

Get Involved, Understanding Rare Disease

Finding & Connecting with Others in the Rare Community