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...

Work continues on the passage of the OPEN Act

  Work continues on the part of 237 patient advocacy organizations to try to pass the OPEN Act (Orphan Product Extensions Now, Accelerating Cures and Treatments; HR 1223 / S 1509). The HPS Network is one of the patient organizations supporting this bill. The OPEN Act offers incentives to pharmaceutical companies to repurpose existing drugs for use to treat rare diseases. Currently, only 5 percent of the more than 7,000 rare diseases have an FDA approved treatment. Many symptoms for rare...

A Run Through History 5K to be held in Oyster Bay, NY

The second annual A Run Through History will be held Sunday, Oct. 22nd at 8:30 am at Theodore Roosevelt Memorial Park in Oyster Bay, NY. The event will benefit the HPS Network and PeerPals.org. To participate in the race, there is a $25 entrance fee, plus a $2.50 sign-up fee. Come run, or just walk, with your friends! The HPS Network is an Oyster Bay-based non-profit serving those impacted by Hermansky-Pudlak Syndrome or HPS. HPS is a type of albinism that causes decreased visual acuity (often...

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