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Archives for: October 5th, 2021

Rare Cancer Day 2021: Bryce’s Clear Cell Sarcoma Story

Written by Maia Craig on September 30, 2021

Bryce was able to get diagnosed with clear cell sarcoma (CCS) quickly. He tries not to think about it but finds it virtually impossible because he knows that there is no cure. Originally, his primary care physician thought the mass could be a desmoid tumor but once the CT scan… 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