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Families affected by Hermansky-Pudlak Syndrome gather each year for a 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.  This year the conference was held on March 31st thru April 2nd at the Uniondale Marriott in Long Island, New York.  The Conference Committee is currently working on the 2024 conference scheduled for April 5th thru April 7th.

An annual one day conference is also held in Puerto Rico.  For more information on everything planned in Puerto Rico, please visit our Puerto Rico events page:  link to page

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.
  • Kids Camp – supervised fun activities for all.
Watch the following video and hear from those who have previously attended our conferences: