Donna Appell is the Executive Director and Founder of the Hermansky-Pudlak Syndrome Network. Appell was appointed to the American Thoracic Society’s Public Advisory Roundtable (ATS- PAR) and received The ATS Public Service Award and a “Presidential Commendation”. In 2014, Appell and the HPS Network received the inaugural recognition from ATS of the “Innovations in Health Equality Award” for their work in Puerto Rico, and she was presented with the “Visionary Award”. She is presently serving on the ATS Board of Directors and Chairperson of the Public arm.
Appell is a member of the Board of Directors for the National Organization of Albinism and Hypopigmentation (NOAH) and is a founding member of the NOAH Research Program. Appell was employed 22 years as an RN in a Cardiothoracic ICU. In 2013, 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.
Stanford University School of Medical Ethics Filmmaker in Residence followed Appell for three years and chronicled the efforts of the HPS Network to recruit to a phase-three drug trial for pulmonary fibrosis. The documentary “RARE” has been seen on PBS and won film festivals and has been used frequently as a Medical Curriculum for many healthcare disciplines.
Appell has been appointed to the External Advisory Boards of the Graduate Programs in Human Genetics at both Sarah Lawrence College and Long Island University, as well as serving as an observation site rotation for LIU during the Spring semester of the first year. She has served as a thesis advisor several times and has been teaching voluntarily for 6 years.
In 2019, Appell was honored to be awarded a Rare Impact Award from the National Organization for Rare Disorders (NORD), that she received at the Space Center in Houston, TX.
She urgently dreams of a cure for her daughter with HPS and thanks everyone involved in our journey.