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Newsroom - Articles

February 28 is Rare Disease Day!

The HPS Network celebrated Rare Disease Day 2021 by hosting a rare disease trivia on Gatherly. Thanks to our graduate student interns who helped curate the facts used for the event! Our membership was asked to spread awareness by sharing their stories on social media....

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...

Calling All Members! Be Part Of The Conference!!

By now you've heard that the Annual HPS Conference will be virtual. We are all very excited at this new opportunity for our membership who may not normally be able to attend our physical conference in Long Island to attend our Miles Apart But Close at Heart...

HPS is a continued Platinum Member of NORD for 2021!

The HPS Network is proud to announce that we have continued our certification as a platinum member of NORD. NORD maintains high ethical standards for patient advocacy groups in order to make sure that we are doing the very best for the populations we serve. Being a...

NIH Symptom Scale Study

  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...