Resource Library

Rare Disease Advisory Councils (RDAC)

Published November 16, 2022

RDAC Stakeholders Meeting – 2022

Rare Disease Day, Social Media Toolkit

Published February 7, 2023

Rare Disease Day Facebook Frame

RDCA-DAP

Published December 1, 2022

NORD Data Literacy

Rare Disease Advisory Councils (RDAC)

Published February 23, 2023

Rare Disease Advisory Council – One Pager

Rare Disease Day

Rare Disease Day Social Media Toolkit

Activities, Rare Disease Day

Rare Disease Day Trivia

Activities, Rare Disease Day

Rare Disease Day Calendar

Press Kit, Rare Disease Day

Governor’s Proclamation Toolkit

Press Kit, Rare Disease Day

Letter to the Editor – Sample

Press Kit, Rare Disease Day

Press Release Patient Story – Sample

Press Kit, 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?