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...

EveryLife Foundation establishes RAREis scholarship fund

The EveryLife Foundation is accepting applications for their new undergraduate/graduate scholarship program called RAREis. To qualify, students must be at least 17 years old and enrolled in a two-year, four-year or graduate level college program. Students can be...

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...

HPS Network presents to Albinos Paraguay

As part of International Albinism Day, Albinos Paraguay invited the HPS Network to give a presentation about Hermansky-Pudlak Syndrome. As flying to Paraguay isn’t possible, Carmen Camacho and Nancy Lee, both members of the HPS Network board of directors, gave an...

Donna Appell profiled by Global Genes

Donna Appell, Founder and Executive Director of the HPS Network, was profiled by Global Genes for the month of June as a Rare Leader. The profile summarizes how Appell became interested in Hermansky-Pudlak Syndrome and how she started the HPS Network. The article also...