The Cute Syndrome Foundation and the National Organization for Rare Disorders today launched a survey series to better understand patients with SCN8A mutations that cause epilepsy, movement disorders, behavioral challenges, and other medical complexities. SCN8A has been diagnosed in approximately 400… 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,… Read More
Last week, a NORD Member Organization and IAMRARE™ Registry Client, The APS Type 1 Foundation Inc., officially launched their patient registry, APS Type 1 (APECED) Registry. NORD’s IAMRARE Registry Program was built to address the special needs of those developing treatments for rare… Read More
