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October 21, 2021

TOPIC: Press Releases

Record-Setting NORD Breakthrough Summit Welcomes Nearly 1,000 Members of the Rare Disease Community

Posted at October 10, 2021 08:15 am by Rohan Narayanan

Two days of insightful and engaging speakers, sessions, and networking at the most important event in rare disease saw record-breaking attendance

October 21,… Read More

September 29, 2021

TOPIC: Press Releases, Voices of Rare Cancer

Rare Cancer Day 2021 Brings Together Rare Disease Community and Advocates

Posted at September 9, 2021 10:46 am by Rohan Narayanan

Washington, DC, September 29, 2021 Tomorrow, the rare disease community will celebrate the third annual Rare Cancer Day. Spearheaded by the National Organization for Rare Disorders (NORD®) Rare Cancer Coalition™, Rare Cancer Day is observed on September 30 to highlight the challenges patients face and to unify individuals living with rare cancers for awareness and early diagnosis.Read More

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