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.

2021-HPS-Conference-Miles-Apart Icon 2021 Annual HPS Conference-Virtual! Miles Apart But Close At Heart

2021 HPS Conference Miles ApartMARCH 19 to 21, 2021 (Virtual Event):

Here at the HPS Network we are working hard to create our annual conferences as virtual events.  You will not want to miss them!!

The first conference will be MARCH 19th-21st  including time for members to connect as well as learn.  This event will bring our time-honored sessions that help us get to know each other, understand what is new in research and learn more how to manage our health.  The HPS experts are ready, willing and able!

The Mother’s Workshop will kick off events as usual, not to be missed!  Some sessions will include a Dad’s Beer Social with Dr. Seward, Transplant Recipient Social, How to Talk to Kids About YOUR HPS, Living with HPS presented by the Appells, our Sticking Together Series for all of our subgroups, Positive Parenting your HPS Child, even a virtual Dinner Show! Sunday will still have our doctors and researchers presenting the newest information about HPS and doing Q&A.

Get additional details and the virtual registration link here!

2021-HPS-Conference-Miles-Apart IconOur Virtual Miles Apart But Close At Heart Puerto Rico Conference

APRIL 21 and 25m 2021 (Virtual Event):

Then on APRIL 24th and 25th, we will be holding our Puerto Rico Conference virtually as well.  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.

Stay tuned for details and the virtual registration link!

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.
Watch the following video and hear from those who have previously attended our conferences: