HPS Network waves registration fees for families in Puerto Rico

The HPS Network is waving registration fees for the 25th Annual HPS Network Conference, to be held March 9 – 11, 2018 at the Long Island Marriott in Uniondale, N.Y. for families that live in Puerto Rico and come to the conference. Registration fees include: meals from Friday dinner to Sunday lunch, childcare and conference materials. For more information call (516) 922 4022 or e-mail:...

Thanks for a successful Capital Campaign

  The HPS Network is grateful to our Capital Campaign donors who made this year’s campaign the most successful yet! Like most non-profits, the HPS Network mails an annual request for donations to help support our work. The response this year was the best ever. “There are not words enough to say thank you to our supporters. Their generosity is what makes it possible for us to keep helping families get an accurate diagnosis, to help families affected by HPS and to continue to drive research...

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....