Scroll
To Top

Archives for: May 6th, 2021

AAMDSIF and NORD Launch New Natural History Study of Paroxysmal Nocturnal Hemoglobinuria (PNH)

Written by Valaree DonFrancesco on May 6, 2021

Bethesda, MD, May 6, 2021—The Aplastic Anemia and MDS International Foundation (AAMDSIF) and the National Organization for Rare Disorders (NORD)® today launched the largest-ever study to research Paroxysmal Nocturnal Hemoglobinuria (PNH), a rare bone marrow failure disease . PNH is characterized by the destruction of red blood cells, blood clots… Read More

NORD Launches Natural History Study for Undiagnosed Rare Diseases

Written by Valaree DonFrancesco on February 28, 2020

Washington, DC, February 28, 2020—The National Organization for Rare Disorders (NORD)®, the leading independent nonprofit organization representing over 25 million Americans with rare diseases, today launched the Undiagnosed Rare Disease Registry, a new study to collect de-identified information about hard-to-solve medical cases that will enable researchers to perform analyses at… Read More

Together, we can be stronger for those that need us.

Written by Lisa Sencen on December 14, 2017
Dear Rare Disease Community Member,
Wow! What an exciting time to be involved with rare diseases. Never before has there been so much progress in diagnosing rare diseases and in the availability of new treatments! 2017 promises to be another record year in terms of new therapies becoming available for patients with rare… Read More

Musical Act Announced for Rare Impact Awards on May 18th

Written by Jennifer Huron on March 2, 2017

Washington, D.C., March 2, 2017—On Thursday, May 18, nationally touring musical artist Gaelynn Lea will perform at the Rare Impact Awards ceremony in Washington, D.C.  In 2016, Gaelynn Lea was named the winner of NPR Music’s second-ever Tiny Desk Contest. Her music video entry rose to the top of over… Read More