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Donna Appell, RN

Donna Appell

Founder and President
Syndrome Network
Oyster Bay Cove, NY

Appointed Member  

Donna Appell is a Registered Nurse and serves on NOAH’s Board of Directors as well as NOAH’s Board of Scientific Advisors.

The mother of a child with albinism, Ms. Appell is also the founder and president of the Hermansky-Pudlak Syndrome (HPS) Network. She and the HPS Network were featured in the documentary “RARE” by Stanford University, seen on PBS and used frequently as medical curriculum. Ms. Appell graduated Magna Cum Laude with a BSN from Molloy College and was awarded the Veritas Medal for Outstanding Alumni. She was employed for 22 years as a RN in the Critical Care Open Heart ICU at St. Francis Hospital.

Her work in advocating for families with special needs children spans two decades and has been covered in Parade Magazine, The New York Times, Women’s Day Magazine, Family Circle Magazine and a Parenting Leaders Award for Parenting Magazine. She has served as Chairperson of the Public Advisory Roundtable of the American Thoracic Society and received the “Innovation in Health Equality” Award for work in Puerto Rico regarding HPS lung disease. She was also appointed to the Council of Public Representatives to the Director of the National Institutes of Health. In 2013, Ms. Appell and her daughter were chosen as one of 30 Heroes to celebrate the 30th Anniversary of the Orphan Drug Act by the Office of Orphan Product Development at the FDA.