Send in your Silver!

  For the past year, in celebration of the 25th Annual HPS Network Conference, members have collected their silver in change jars at home, and at local businesses. Renee McEvoy, CFO of the HPS Network, is asking that everyone send in the revenue from their change jars now to start to pay Network bills for conference. Thanks to everyone who participated in this...

Families affected by Hermansky-Pudlak Syndrome to gather for 25th Annual Conference

Oyster Bay, N.Y. The Hermansky-Pudlak Syndrome (HPS) Network will hold its 25th Annual Conference March 9 – 11, 2018 at the Long Island Marriott in Uniondale, N.Y. HPS is a type of albinism that involves low vision (usually legal blindness), a bleeding disorder, and in some cases, bowel disease very similar to Crohn’s disease. Depending on the gene involved, it may also cause pulmonary fibrosis or a scarring of the lungs. Although it occurs around the world in all ethnic groups, it’s most...

HPSers join ATS at Rally on the Hill

Part of the HPS Network team attending the American Thoracic Society (ATS) meeting in Washington DC in May joined members of the ATS to rally for issues of importance to patients with lung diseases on Capitol Hill. Nancy Lee, board member of the HPS Network, Donna Appell, CEO and Founder of the HPS Network, Ashley Appell, Carmen Camacho, Frankie Feliciano, Candice Sipe, and Crystal Sipe teamed up with physicians from the ATS for meetings with Congressional representatives or their staff....

Kids with HPS to learn circus tricks

Kids may dream about running away to be in the circus, but kids from the Hermansky-Pudlak Syndrome (HPS) community will get to learn some circus skills at the 25th Annual HPS Network Conference, to be held March 9 – 11, 2018 at the Long Island Marriott in Uniondale, N.Y. A team from the National Circus Project will be on hand at the kids’ portion of the conference to teach them various circus skills such as juggling and rope tricks. The kids program includes children with HPS, as well as the...

Stem cell expert to present on Science Sunday at the 25th Annual HPS Network Conference

Dr. Konstantinos D. Alysandratos, MD, PhD, will present on Science Sunday to the HPS community at the 25th Annual HPS Network Conference, March 9 – 11, at the Long Island Marriott in Uniondale, N.Y. His presentation will help us understand what different types of stem cells are, and how they might relate to current and future research on Hermansky-Pudlak Syndrome. He will be giving a more scientific presentation to Meeting of the Minds, an invitation-only HPS researcher meeting held the day...

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