During the 2018 Rare Diseases & Orphan Products Breakthrough Summit, NORD spoke with its IAMRARE registry users to get their thoughts on how their patient registries are benefiting their communities and how they are able to use the data. See the videos below and on our Youtube channel here.
In recent years, NORD has provided Patient Assistance Programs to assist the Chronic Granulomatous Disease (CGD), Cystinosis and Urea Cycle Disorders (UCD) communities. As of Monday, March 18, we are delighted to announce an expansion to the support we are able to provide to these communities. See below for information on each of the three expanded… Read More
Today, Representatives GK Butterfield and Gus Bilirakis introduced a resolution that celebrates the success of the Orphan Drug Act (ODA) and calls for continued support of the legislation.
Now in its 36th year, the ODA has successfully encouraged the pharmaceutical industry to develop therapies for those with rare diseases. Prior to the ODA’s enactment in 1983, only 34 therapies for… Read More
Washington, DC, March 12, 2019—The National Organization for Rare Disorders (NORD) today announced the individuals, organizations and industry innovators who will be honored for their outstanding work in support of the rare disease community at this year’s Rare Impact Awards on June 22. The Rare Impact Awards is an event hosted… Read More
Last week, a NORD Member Organization and IAMRARE™ Registry Client, GBS\CIDP Foundation, officially launched their patient registry, GBS|CIDP Patient Registry. NORD’s IAMRARE Registry Program was built to address the special needs of those developing treatments for rare diseases with extensive input from FDA, NIH, patients, organizations and experts in the field. We are pleased… Read More