Our mission at the Network is to find a cure for HPS. This is the driving force behind all that we do. A cure is not possible without research and for that we need you!WE NEED YOUR HELP! Our mission at the Network is to find a cure for HPS. This is the driving force...
Newsroom - Articles
Thanks for making our Annual HPS Christmas Concert Jingles and Jazz 2020 a great success!
Please Click Here to register for the Annual HPS Christmas Concert Jingles and Jazz 2020
Annual HPS Christmas Concert Jingles and Jazz 2020December 12, 2020 at 7 pm Please click this link to register This year, our annual Jingles and Jazz Christmas Concert will be going virtual. Enjoy an evening of songs and cheer to usher in the Holiday season....
Giving Tuesday
Giving Tuesday Zoom talk. Please join us and view our latest Zoom talk in Youtube for more information. Click here to see a Youtube video of the Zoom talk.
Giving Tuesday 2020
Giving Tuesday 2020 is fast approaching! The HPS Network will be participating in Giving Tuesday this December 1, 2020. We understand these are challenging times, but the work of finding a cure does not stop! This year, we have a new software to make fundraising...
Please Visit The Survey Tab to Complete Important Research Surveys! Thank you!
Recall of nasal DDAVP
Ferring US issued a voluntary recall of DDAVP nasal spray 10 mcg/0.1 mL, Desmopressin Acetate Nasal Spray 10 mcg/0.1 mL, STIMATE Nasal Spray 1.5 mg/mL because of superpotency. Superpotency can cause low sodium levels that could result in seizures, coma or death. If...
2020 Rare Artist Contest now accepting submissions
The 2020 Rare Artist Contest is open for business! Anyone connected to the rare disease community – patient, caregiver, friend, medical professional etc. – may enter the contest. There are different categories for children, teens and adults. Cash prizes are awarded...
New HPS gene identified
Researchers at the University of Bordeaux’s Molecular Genetics, Rare Disease, Genetics, Metabolism Lab report finding a new gene that causes the HPS type of albinism in the Journal of Genetics in Medicine. They found two individuals with the newly discovered gene, HPS...
Albismo Chile invites HPS Network to give presentation
Albismo Chile, the organization for families affected by albinism in Chile, invited Carmen Camacho to give a presentation about Hermansky-Pudlak Syndrome (HPS) to its members as part of International Albinism Awareness Day. “I was honored to be asked to give this...