Results from the 2017 HPS Network Conference Survey

The HPS Network would like to thank the conference attendees who completed the post conference survey. We had an 11 percent response rate. Here is a peek at some of the results we will be able to share with conference funders and supporters: 91 percent reported they learned something at conference they didn’t know before attending the event. 94 percent reported they learned something they will share at a future appointment with a medical provider. 100 percent reported they learned something...

HPS Community “Tunes in” for 24th Annual Conference

Nearly 300 people with HPS, their families and HPS researchers, met in Uniondale, N.Y. in March for the 24th Annual HPS Network Conference at the Long Island Marriott. The theme, Tune in the Network! The weekend was kicked off by a first-ever Mothers’ Workshop, given by Sheila Adamo, LCSW CADC. Adamo is the mother of a child with albinism, and now has a company doing workshops for the parents of children with special needs. While the moms were getting to know each other, the rest of their...

Appell recognized by the governor of Delaware

Donna Appell, President and Founder of the HPS Network, was recognized by a special proclamation by Governor John Carney and Lieutenant Governor Bethany Hall-Long of Delaware for her work on behalf of people affected by Hermansky-Pudlak Syndrome, as well as those with rare diseases. The proclamation was presented to her at the 24th Annual HPS Network Conference by Jeff and Amber Klein from Delaware. It reads, in part, “Over the course of her career, Mrs. Appell has been guided by her passion...

HPS Network a sponsor of The Gordon Research Conference on Lung Development, Injury and Repair

The HPS Network is one of several sponsors of The Gordon Research Conference on Lung Development, Injury and Repair, held at Colby-Sawyer College in New London, NH Aug. 20 – 25th. Susan Guttentag, who works on HPS Research, is a Vice Chair of the event. Presentations at the conference examine underlying lung development, injury and repair that contributes to lung diseases such as pulmonary fibrosis. “It is an honor to get to support brilliant minds coming together to explore science that may,...

Show off your RARE talents

  The ninth annual Rare Artist competition, held by the EveryLife Foundation, is open and ready for submissions. The contest celebrates the talents of the rare disease community and is open to patients with rare diseases, family members, caregivers and medical professionals. Entries will be accepted through Dec. 7th. There are categories for all ages and two prizes will be awarded per category. To learn more, go to:...

Family sells Bags for the Cure

  Becky Nieves, a member of the HPS Network Board of Directors and the mom of a daughter with HPS, recently held an online fundraiser for the Network using www.mixedbagdesigns.com. “This fundraiser was super easy, and it can be done totally online,” says Nieves. Mixed Bags Designs offers tots and bags, kitchen gadgets and electronic accessories. They donate 40 percent of your sales to the HPS Network and offer free tools to use via e-mail or social media to promote the fundraiser. It is also...

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