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Archives for: November 18th, 2022

Request for Applications: New Patient Registries

Written by Rohan Narayanan on November 18, 2022

The National Organization for Rare Disorders (NORD) announces a request for applications for the implementation of up to four new patient registries on the IAMRARE platform. Funding is made available through the Rare Disease Cures Accelerator – Data and Analytics Platform (RDCA-DAP®), a collaborative agreement with the Critical Path… Read More

NORD Welcomes Aliza Fink, D.Sc. as Director of Research Programs

Written by Rohan Narayanan on September 23, 2021

Washington, DC, September 23, 2021—The National Organization for Rare Disorders (NORD®), the leading patient advocacy organization dedicated to the identification, treatment and cure of rare diseases, announced the appointment of Aliza Fink, D.Sc. as the new Director of Research Programs. Fink, an epidemiologist by trade, brings decades of expertise and… Read More

Tatton Brown Rahman Syndrome Community and NORD® Launch Natural History Study of Tatton Brown Rahman Syndrome (TBRS)

Written by Rohan Narayanan on September 22, 2021

Research study is open to participants worldwide to advance understanding and treatments for TBRS, a mutation of DNMT3A, causing overgrowth, autism, intellectual disabilities, orthopedic concerns, cardiac issues, and a variety of other health and developmental concerns.

Stanfordville, New York, September 21 — Tatton Brown Rahman Syndrome Community and the National Organization… Read More