Building Your Village: HPS Network Webinar

Save the Date! Aug, 13, 2019 at 8:00 pm ET There are lots of times when those of us impacted by HPS, whether we are people with HPS or caregivers, need our community support systems. They say it takes a village, and we need our villages to help us along the way. This...

Funding the HPS Conference Focus Group

Save the Date! Aug 14, 2019 at 8:00 pm ET We’ve come a long way. Instead of looking for researchers and hoping they will be interested in HPS, we have some of the world’s leading minds in gene therapy and stem cell research working on HPS. We have promising candidate...

Entries now open for the Rare Artist Awards

The Rare Artist Contest, sponsored by the EveryLife Foundation for Rare Diseases, is now taking submissions for its annual art contest featuring the work of artists with rare diseases, or their family, caregivers, friends, researchers or medical personnel. There are a...

HPS Network visits the Kotton Lab

The HPS Network visited the Kotton Lab in Framingham, Mass in July to learn more about how the lab is using stem cells derived from the blood of people with HPS to find clues to treat the lung disease of HPS. The lab collected blood samples at the HPS Conference two...