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Archives for: May 27th, 2021

NORD Welcomes Edward Neilan, MD, PhD, as Chief Medical and Scientific Officer

Written by Valaree DonFrancesco on May 27, 2021

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

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