RAREis Scholarship

Pursue Your Dreams through the #RAREis Scholarship Fund The #RAREis Scholarship Fund was established in 2020 to help young adults with rare diseases to pursue their dreams through education. Thanks to the support of the #RAREis program by Horizon Therapeutics, The...

March 2022 Advocacy Update

Rare Disease Day has been brought to the public’s attention since 2008, but even before this day came to be there have been so many initiatives that the HPS Network, and the Rare Disease Community have been advocating for, and standing behind!  One of the biggest asks...

2022 Mother’s Workshop

Mothers!!  Join us for our annual Mothers’ Workshop with Sheila Adamo, LCSW, CADC Sunday, April 3rd, from 5pm to 8pm ET Registration is required for this event: LINK TO REGISTRATION...

Join Us on June 10, 2022

Mark your calendars to join us and make HPS history advocating for future treatments. The HPS Network will host an Externally-Led Patient Focused Drug Development meeting on June 10, 2022. This meeting will be open to the public, with speakers and attendees attending...

HPS Network awarded an additional $150,000 grant

The HPS Network was awarded a $150,000 grant on January 31, 2022, as part of the Rare As One (RAO) Network, a program of the Chan Zuckerberg Initiative (CZI).  The HPS Network is currently completing a two-year grant from CZI.  The first grant has allowed the Network...