Eat for the Cure at Mama Gina’s in Valley Stream, NY

Join the HPS Network and eat for the cure Saturday, Aug. 18 at Mamma Gina’s Pizzeria, 104 East Merrick Rd in Valley Stream, N.Y. The event will run from 4:00 pm to 9:00 pm. Mamma Gina’s Pizzeria will donate 20 percent of your bill to the HPS Network if you mention the HPS Network’s event when you order (and remind them when you pay). It is very helpful for planning purposes if you RSVP at: https://www.groupraise.com/events/62927 Thanks Amber Klein for organizing this event....

26th Annual HPS Network Conference to be held for families affected by HPS

  Families impacted 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...

ATS Day in Puerto Rico

Hermanksy-Pudlak Syndrome Education Day About: The American Thoracic Society (ATS), the Hermansky-Pudlak Syndrome Network (HPS Network) and the San Juan City Hospital (Puerto Rico) presents a free one day education seminar on Hermansky-Pudlak Syndrome. This event is being held in conjunction with the “Rare Lung Diseases Week at the ATS” program-an educational activity designed to foster interaction between clinicans, patients, and patient advocates on lung and airway disorders. Where: Sheraton...

Hermansky-Pudlak Syndrome Education Day to be held in Puerto Rico

The American Thoracic Society (ATS), the Hermansky-Pudlak Syndrome Network (HPS Network) and the San Juan City Hospital Puerto Rico will offer a free one-day educational seminar for patients affected by Hermansky-Pudlak Syndrome, their families and health care providers. The event will be held Saturday, April 21st from 9:00 am to 3:00 pm at the Sheraton Puerto Rico Hotel, 200 Convention Blvd, San Juan PR 0090. A light breakfast and complimentary lunch will be served. To RSVP, e-mail Donna...

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...

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...

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