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

Resource Library

Proclamation Toolkit – All Municipalities

2021 Form 990

2021 Annual Report

Genome Editing 4 – The approval process

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

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

Genome Editing 1 – What is genome editing?

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

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

2015 Neurological Rare Disease Special Report

The Five Steps in Drug Development (Spanish version)

The Five Steps in Drug Development

Letter Templates for New Nonprofits for Board Members and Medical Advisors

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

Finding & Connecting with Others in the Rare Community

Rare deserves care.
Make a difference TODAY!