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Archives for: March 22nd, 2021

Fanconi Anemia Research Fund and NORD Launch Natural History Study of Fanconi Anemia

Written by Valaree DonFrancesco on April 3, 2020

This week, the Fanconi Anemia Research Fund (FARF) and the National Organization for Rare Disorders (NORD) launched the largest-ever study to research Fanconi anemia (FA), a patient-driven natural history registry that will result in a wide variety of clinical findings. Fanconi anemia currently has no cure.

The new study, “An observational… Read More

NORD IAMRARE DHPS Patient Registry Launched

Written by Lisa Sencen on April 26, 2019

Yesterday, a NORD Member Organization and IAMRARE™ Registry Client, The DHPS Foundation, officially launched their patient registry, DHPS 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… Read More

NORD IAMRARE HI Global Registry Launched

Written by Lisa Sencen on October 9, 2018

Yesterday, a NORD Member Organization and IAMRARE™ Registry Client, Congenital Hyperinsulinism International (CHI), officially launched their patient registry, HI Global 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