HPS moms to gather for third annual Mothers’ Workshop at the HPS Network Conference

  Mothers of children with HPS will gather for their third annual workshop Friday, March 8, 2019 at the 26th Annual HPS Network Conference. The HPS Network Conference will be held March 8 – 10, 2019 at the Long Island Marriott in Uniondale, NY. The Mother’s Workshop will begin at noon and run until 6:00 pm. Moms will have a chance to network with one another, talk about the importance of self care and share ways to cope with the many issues surrounding raising a child with HPS. “We have to...

HPS Network offers wallet card with QR code

The HPS Network is offering a wallet-sized medical health alert card that has a QR code physicians or emergency personnel can scan to instantly be directed to information about HPS, treating bleeding and even some of the key standard-of-care medical papers they might find helpful. The information is in both English and Spanish. A QR code is a symbol that has a barcode in it. The symbol can be scanned with any number of free applications available for all types of smart phones. Once scanned,...

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...

HPS Network facilitates research at its annual conference

Blood and stool samples for five different protocols were collected within the span of two hours at the HPS Network 25th Annual Conference, held March 9 – 11 in Uniondale, N.Y. “This project had several logistical challenges,” says Valarie Friedman, RN and Medical Director of the HPS Network, “We were able to work with our members, and the researchers, to overcome those challenges and make this happen.” People with HPS are visually impaired, and thus to ensure informed consent, consent forms...

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...

HPS Network adds 48 new people with Hermansky-Pudlak Syndrome to registry

The HPS Network, a non-profit patient organization serving families affected by Hermansky-Pudlak Syndrome (HPS) added 48 new people with HPS to its registry between March 2017 and March 2018 as part of its Hundred People Search (H.P.S.) campaign. The HPS Network often assists families and their physicians access diagnostic testing, and provides education and other support services after diagnosis. “We never want anyone to test positive for HPS,” says Heather Kirkwood, Director of...