27th Annual HPS Network Conference

Our Vision 2020!

Families affected by Hermansky-Pudlak Syndrome will gather for the 27th Annual HPS Network Conference, March 13 – 15, 2020, at the Long Island Marriott in Uniondale, N.Y. This year’s theme: “Our Vision 2020.”

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.

The conference includes:

  • 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.

Spanish language translators will be available.

Limited scholarship assistance is available in some cases. Contact the HPS Network to learn more.


The conference is held at the Long Island Marriott Hotel, 101 James Doolittle Boulevard, Uniondale, NY 11553, 516-794-3800.

To book hotel call 516-794-3800 or online using this link and use code HPK.


Online registration is now closed. Please call the HPS office for further assistance at 1 (800) 789-9HPS.

For budgeting purposes, registration costs are as follows:

$145 per adult

$85 per child (12 and under)

$520 for immediate family of five or more

Late registration (after Feb. 14, 2020) fees are –

$170 per adult

$110 per child (12 and under)

$645 for immediate family of five or more

Conference registration includes meals from Friday dinner at 6:00 pm to Sunday lunch at noon. It also includes all conference materials.

Learn more about the Meeting of the Minds, an invitation-only scientific meeting for those researching Hermansky-Pudlak Syndrome. Meeting of the Minds is co-located with the HPS Network Conference.

Hear from those who have attended the conference in the past here.