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...

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...

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...