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...
Newsroom - Articles
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...
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....
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...
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...
Campers will sing to raise money for HPS
Joanne Criblez’s summer camp voice students are giving a concert to raise money and awareness for Hermansky-Pudlak Syndrome (HPS) Thursday, Aug. 10th at the LIU-Post Hillwood Commons Theatre, 720 Northern Blvd., Brookville, NY. The performance is “A Night At The...
Shop for the cure at iGive
In July, the HPS Network received a check for $86.56 from www.igive.com – an online shopping mall that allows merchants to donate a percentage of your purchase price to the cause of your choice. Granted, this is not a ton of money, but it will pay for six new patient...
Center opens for HPS study in Chicago
Oyster Bay, NY – A study location for an observational study of Hermansky-Pudlak Syndrome has opened at Loyola University in the Chicago area. Hermansky-Pudlak Syndrome, or HPS, is a type of albinism that involves other health-related issues beyond low vision and...
Donna Appell nominated for Eagle Rare Life Award
Donna Appell, Executive Director and Founder of the HPS Network, has been nominated for the Eagle Rare Life Award, a contest held by the Eagle Rare Bourbon company. To win, however, she needs your vote every day until Dec. 5th. If Donna wins, the prize is $50,000....
Boxcar Bar and Arcade holds HPS Network fundraiser
The Boxcar Bar and Arcade in Greensboro, N.C. held an Fundraiser Night on June 28 to benefit the HPS Network. They donated 15 percent of sales to the HPS Network from the night. Karen and Tommy Tillman worked with Boxcar on the event and offered information about the...