HPS Header Logo
HPS Header Logo


26th Annual HPS Network Conference

Life is Sweet When We Are Together!

Families affected by Hermansky-Pudlak Syndrome will gather for the 26th Annual HPS Network Conference, March 8 – 10, 2019, at the Long Island Marriott in Uniondale, N.Y. This year’s theme: “Life is Sweet When We Are Together.”

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.

Confirmed speakers include:

Sheila Adamo, LCSW, CADC

Arlene Drack, MD

William Gahl, MD PhD

Bernadette Gochuico, MD

Melissa Merideth, MD

Christian Mueller, PhD

Lisa Young, MD

Louis J. Cohen, MD

Sharon Granville, MS, CCLS, CTRS, NCC

Souheil Y. El-Chemaly, MD

Matt Bailey

Samuel Seward, MD

As more speakers are confirmed, we will add them.

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

HOTEL ROOM BLOCK IS FULL. Please call Renee at the office to arrange accommodations at 1-800-789-9HPS.

Online registration is closed.  Please click here to download this form and mail in the registration along with appropriate fees or call Renee to make arrangements at 1-800-789-9HPS.

For budgeting purposes, registration costs are as follows:

Late registration (after Feb. 11, 2019) fees are –

$150 per adult

$100 per child

$575 for a 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.