The Hermansky-Pudlak Syndrome Network (HPS Network) was awarded a Patient Advocacy Leadership Award by Sanofi Genzyme to support the Network’s “Individualized Research Plan” (IRP) project. To prepare for future recruitment into drug trials, the Network is working with its membership to develop individualized plans for research participation. The process helps to identify interest in research participation, provide information about current research participation opportunities and identify any barriers to participation as well as strategies to overcome them.

“We are so honored and grateful to receive this award,” says Donna Appell, Founder and  Executive Director of the HPS Network, “To make research truly patient centered, we need to meet patients where they live and this program is meant to do just that. This support will allow us to increase our  engagement and effectiveness as well as further perfect the Individualized Research Plan tool its self.”

Patients with Hermansky-Pudlak Syndrome interested in learning more about the “Individualized Research Plan” project and how they might participate should e-mail: info@hpsnetwork.org or call: (516) 922-4022.

The HPS Network is a 501©3 organization serving those affected by Hermansky-Pudlak Syndrome (HPS). HPS is a form of albinism that causes legal blindness, a bleeding disorder and in some types, digestive disease very similar to Crohn’s disease. It also causes pulmonary fibrosis, a fatal scarring of the lungs, in types 1, 2 and 4.

Sanofi Genzyme’s Global Patient Advocacy team launched the Patient Advocacy Leadership (PAL) Awards grants program in 2011 to encourage bold new ideas and programs to support the Lysosomal Storage Disorder (LSD) community worldwide. The PAL Awards program funds innovative projects focused on disease awareness and education, community mobilization, non-profit development, and patient care and support programs to allow organizations to begin new efforts to address unmet needs in their local LSD patient community.

Contact Us


Phone: 1 (800) 789-9HPS
Email: info@hpsnetwork.org

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