Mother’s Workshop planned for this year’s HPS Conference

Mothers with children that have Hermansky-Pudlak Syndrome will be able to network with each other and learn how to handle the common issues that come up raising a child with HPS at the 24th Annual HPS Network Conference, to be held March 10 – 12, at the Long Island Marriott in Uniondale, NY. The workshop will be held March 10, from 2:00 pm to 6:00 pm. Friday is always an arrival day at the HPS Conference, so if you can’t make it by 2:00 pm then join the workshop when you arrive. The workshop...

Fun activities planned for kids of all ages at the HPS Conference Kids Camp!

  Kids attending Kids Camp at the HPS Conference, to be held at the Long Island Marriott in Uniondale, NY March 10 – 12 will have a plethora of fun activities to keep them busy while their parents attend conference sessions. The HPS Kids Camp includes children with HPS, children of adults with HPS and often, the children of researchers and physicians presenting at the conference. This year’s annual field trip (for kids 5 and up) will be to the Cradle of Aviation Museum near the hotel. While...

Research on the GI issues of HPS to be discussed at 24th Annual Conference

    A number of researchers working on the gastrointestinal issues of Hermansky-Pudlak Syndrome will join us at this year’s HPS Conference to discuss current and planned research projects. If approval is secured in time, some samples may be collected at the conference. If not, HPSers affected by the gastrointestinal complications of HPS will be able to learn how they might participate in upcoming research projects. They will also have a chance to network with other patients affected by the GI...

Early bird hotel and registration extended

The early bird hotel and registration prices for the HPS Network Conference are extended until Valentine’s Day, Feb. 14. This year’s conference theme is “Tune In The Network.” The HPS Conference is a chance to meet other families affected by the HPS type of albinism, participate in educational sessions about how to manage HPS, meet medical experts on the syndrome and have a lot of fun! If you need a registration form, e-mail info@hspnetwork.org. To register for the hotel, go to:...

Dr. Mueller to present about gene therapy at 24th Annual HPS Conference

Dr. Christian Mueller, Associate Professor in the Department of Pediatrics and in the Horae Gene Therapy Center at the University of Massachusetts Medical School will give a presentation on the basics of gene therapy at the 24th Annual HPS Network Conference, March 12 at the Long Island Marriott in Uniondale, N.Y. While there currently is not a gene therapy or gene therapy clinical trial for Hermansky-Pudlak Syndrome, scientists are working on potential gene therapies in the lab. Dr. Mueller...

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