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Archives for: May 11th, 2022

NORD Hosts the Largest Gathering of a Rare, Post-Transplant Cancer in History

Written by Rohan Narayanan on May 11, 2022

Post-Transplant Lymphoproliferative Disorder (PTLD) is a rare cancer related to organ and stem cell transplants, as well as Epstein bar disease. There is no nonprofit organization dedicated to this community and the last known gathering involved less than a dozen patients and caregivers, pre-pandemic. When NORD learned of interest… Read More

NORD Announces over $100,000 in Grant Funding Available for Rare Disease Research

Written by Rohan Narayanan on April 29, 2022

Three RFPs Now Open for Qualified Researchers through NORD’s Jayne Holtzer Rare Disease Research Grants Program 

April 29, 2022, Washington, DC – Today, the National Organization for Rare Disorders (NORD®) announced three new requests for proposal (RFP) for grant funding related to the following rare diseases: Autoimmune… Read More

The Snow Foundation for Wolfram Syndrome Research and NORD® Launch Natural History Study of Wolfram Syndrome

Written by Valaree DonFrancesco on April 19, 2022

Clayton, MO, April 19, 2022 —Today, April 19, 2022, The Snow Foundation for Wolfram Syndrome Research and the National Organization for Rare Disorders, Inc. launched the largest-ever study to research Wolfram syndrome, a disease that causes diabetes insipidus, diabetes mellitus, optic atrophy, and deafness as well as various other possible… Read More

NORD’s RareLaunch Program Announces Expanded Course Learning to Help Launch and Grow Rare Disease Nonprofits

Written by Rohan Narayanan on January 20, 2022

RareLaunch provides critical hands-on learning and support to build capacity for rare disease-focused organizations

January 20, 2022, Washington, DC – Today, the National Organization for Rare Disorders (NORD®) announced enhanced learning and updated courses now available through its innovative RareLaunch® program. Throughout its long history, NORD has been committed to… Read More