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February 17, 2022

TOPIC: Press Releases, Get Involved, Rare Disease Day

Rare Disease Advocates and Supporters Share the Importance of Raising Awareness Ahead of Rare Disease Day 2022

Posted at February 2, 2022 08:36 am by Rohan Narayanan

Organizations and individuals from across the country are partnering with NORD to help make a difference for rare disease patients and families on Rare Disease Day 2022

February 17, 2022, Washington, DC – Leading up to Rare Disease Day on Monday, February 28, the National Organization for Rare Disorders (NORD) is highlighting the partners and supporters of this incredible international… Read More

February 9, 2022

TOPIC: Get Involved

Request for Proposal: NORD’s 2021 Annual Report

Posted at February 2, 2022 03:53 pm by Rohan Narayanan

Request for Proposal (RFP)
Copy and design for NORD’s 2021 Annual Report

BACKGROUND

The National Organization for Rare Disorders® (NORD), a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its 300+ patient organization members, is committed to the identification, treatment, and cure of rare disorders through Read More

December 14, 2021

TOPIC: Get Involved, Rare Disease Day

How to Light Up for Rare – Rare Disease Day 2022

Posted at December 12, 2021 09:00 am by Maia Craig

Rare Disease Day is a day of awareness for the over 7,000 rare diseases that impact over 300 million people globally! 

As the US sponsor for Rare Disease Day, NORD is leading the call to light up the country in rare disease colors and unite both the rare disease community and the country as a whole. The more buildings, landmarks and monuments illuminated, the greater the impact! The goal of Light Up for… Read More

November 18, 2021

TOPIC: Advocacy, Get Involved

With the Build Back Better Act, Congress Threatens Progress for Americans with Rare Diseases

Posted at November 11, 2021 08:15 am by Rohan Narayanan

As Congress continues to debate the policies to include in the final version of the Build Back Better Act, the House of Representatives has inexplicably chosen to take aim at one of the most vulnerable populations in our nation: the rare disease community. The Build Back Better Act, H.R. 5673, currently includes a harmful provision that threaten the… Read More

March 3, 2020

TOPIC: Patients & Members, Events, Get Involved

NORD Announces Sing Me a Story Raffle for Upcoming Living Rare, Living Stronger Patient and Family Forum

Posted at March 3, 2020 08:00 am by Valaree DonFrancesco

NORD is proud to welcome Sing Me a Story to the upcoming 2020 Living Rare, Living Stronger Forum in Cleveland, Ohio, where the ideas of children living with rare diseases will be turned into song! This opportunity is supported by Horizon Therapeutics’ #RAREis program.

NORD will spotlight one… Read More