Wasilla, Alaska, August 3, 2022—All Things Kabuki and the National Organization for Rare Disorders, Inc. have launched a study with global reach to research Kabuki syndrome, which causes a variety of complications which may include mild to moderate intellectual impairment, growth delay, skeletal abnormalities, heart defects, hearing impairment, hypotonia,… Read More
This Request for Proposal (RFP) is for the creation of a logo and branding guidelines for the Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP®), a project led by Critical Path Institute (C-Path) and the National Organization for Rare Disorders (NORD) with funding and support from the U.S. Food and… Read More
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
Stanfordville, New York, September 21 — Tatton Brown Rahman Syndrome Community and the National Organization… Read More
Quincy, MA and Danbury, CT, May 27, 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 Edward Neilan, MD, PhD, to the new position of Chief Medical and Scientific Officer. Dr. Neilan, an internationally… Read More
