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September 23, 2021

TOPIC: Press Releases, Research

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

Posted at September 9, 2021 10:24 am by Rohan Narayanan

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 proficiency to NORD’s ongoing efforts to identify real-world research,… Read More

September 22, 2021

TOPIC: Press Releases, Research, Registries

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

Posted at September 9, 2021 08:00 am by Rohan Narayanan

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 for Rare Disorders, Inc. today launched the largest-ever study… Read More

September 15, 2021

TOPIC: Press Releases, Research, RDCA-DAP

Rare Disease Innovation and Data Sharing Accelerated by New RDCA-DAP Program

Posted at September 9, 2021 08:30 am by Rohan Narayanan

TUCSON, Ariz. and WASHINGTON, September 15, 2021 — The Rare Disease Cures Accelerator-Data and Analytics Platform initiative (RDCA-DAP®) officially launched its next phase on Tuesday establishing itself as the leading platform to accelerate rare disease treatment innovation. The launch was part of an all-day virtual workshop and annual meeting of rare disease stakeholders, featuring a platform demonstration, industry expert presentations… Read More

June 11, 2021

TOPIC: Patients & Members, Research, Advocacy, Patient Stories

Ray Stevens’ Rare Disease Reflections from 22,000 Feet

Posted at June 6, 2021 10:15 am by Valaree DonFrancesco

Ray Stevens, rare disease researcher, advocate, and adventure seeker, has concluded his Himalayas and Mount Everest trek to rare awareness for NORD and our community. Ray made it just past 22,000 feet of elevation, which marks camp two of four before reaching the mountain’s summit. According to Ray, climbing Everest was an amazing lesson about how hard it is to live without enough oxygen. While traveling home, he reflected on his journey by saying, “Although I can never fully understand what those… Read More