Published January 31, 2023 by NORD
By Karin Hoelzer Rare disease patients and caregivers often ask me whether they should really engage in health policy. Is it really worth the trouble? In short, the answer is …
Read morePublished October 6, 2022 by NORD
NORD’s Hurricane Emergency Relief Fund provides limited financial assistance to those with a rare disease who are victims of natural disasters. Emergency relief funds may be requested once per household/per …
Continue reading “Help for rare disease patients impacted by recent 2022 hurricanes”
Read morePublished July 19, 2022 by NORD
On Tuesday, July 19, join rare disease advocates and coalition partners across the nation for a social media day of action to urge Congress to pass the Safe Step Act …
Read morePublished July 12, 2022 by NORD
Many people with rare diseases require medical nutrition prescribed by a healthcare provider to prevent permanent disability and mortality, allow for normal growth in children and adults, or provide adequate …
Read morePublished July 7, 2022 by NORD
Explore the five steps in drug development and discover new opportunities to get involved More than 95% of rare disease patients lack an FDA-approved treatment for their condition. However, today …
Continue reading “A Conversation on Drug Development for Rare Diseases”
Read morePublished June 16, 2022 by NORD
The current baby formula shortage has rocked the lives of American families, as parents and caregivers across the country struggle to find the formula they need to feed their children. …
Read morePublished February 17, 2022 by NORD
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, …
Read morePublished February 9, 2022 by NORD
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 …
Continue reading “Request for Proposal: NORD’s 2021 Annual Report”
Read morePublished December 14, 2021 by NORD
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 …
Continue reading “How to Light Up for Rare – Rare Disease Day 2022”
Read morePublished November 18, 2021 by NORD
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 …
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