Donna Appell is Executive Director and Founder of the Hermansky-Pudlak Syndrome Network. Her work for the HPS community involves many efforts in Puerto Rico including annual conferences for both families and clinicians, supporting a multidisciplinary clinic with amazing volunteer physicians on the island, and advocating for a standard of care that will enhance the quality of life. Working to find treatments for pulmonary fibrosis she was appointed to the American Thoracic Society’s Public Advisory Roundtable (ATS- PAR) and received The ATS Public Service Award, The “Presidential Commendation” and in 2014 the ATS Innovations in Health Equality. In 2015, she was presented with the “Visionary Award” and is honored to be the incoming Chairperson. Additionally, Appell is a member of the Board of Directors for the National Organization of Albinism and Hypopigmentation (NOAH) and a co-founding member of their research program. Appell was employed 22 years as an RN in an Open Heart ICU. 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 and NORD and received NORD’s RARE Impact Award in 2019. The HPS Network is a Chan Zuckerberg Initiative Rare As One Cycle 1 Grant Recipient. The strongest educators in her life are her two children who teach kindness, courage, and determination each and every day.