Families affected by Hermansky-Pudlak Syndrome gather each year for the HPS Network conference. The HPS Network Conference is a place for families, physicians and researchers with an interest in Hermansky-Pudlak Syndrome (HPS) from around the world to gather for fellowship, education and fun.
April 24th and April 25th, 2021, Virtual Puerto Rico Conference, in Spanish (Miles Apart But Close At Heart)
On April 24th and 25th, we will be holding our Puerto Rico Conference virtually. This event will be presented in Spanish for all our members in Puerto Rico and beyond!
The first day will be for families and individuals with HPS. The sessions planned will teach us all about our health and wellbeing. The second day will be set aside for physicians and healthcare provider education.
HPS Conferences include:
- Opportunities to meet and network with other families affected by HPS.
- Educational sessions for everyone from the newly diagnosed, to seasoned veterans. Topics include: an overview for those newly diagnosed, women’s health issues, coping with the GI complications of HPS and information about lung transplantation, among others.
- Updates on the most current HPS research
- Opportunities to meet the doctors and researchers working to find better treatments, and someday, the cure.
- Sessions designed to be a chance for attendees to have fun with new and old friends.
- Sessions to learn how your family can participate and be a part of the solution.
- Opportunities to participate in HPS research.
- A workshop for the moms of kids with HPS.
- Kids Camp – supervised fun activities for all.