NEWSROOM

Rare Disease Workgroup Appointment

Ashley Appell has been appointed to New York’s Rare Disease Workgroup. Ashley was selected to serve as a patient advocate. She will express patient concerns and goals to the workshop group. The group will then advise New York Assembly representatives regarding public...

Pharma listens to the HPS story

Donna Appell, Executive Director and Founder of the HPS Network, delivered a presentation about Hermansky-Pudlak Syndrome and the HPS Network to the 2022 Corporate Meeting of the American Thoracic Society (ATS). The meeting is attended by representatives of the...

EL-PFDD Meeting held on June 10, 2022

June 10, 2022 More than 250 individuals participated in our long awaited Day in the Life Event. If you were a part of the meeting, THANK YOU!  If you weren't able to participate that day, you can still watch the recorded meeting as well as submit your comments.  We...

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...

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...

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....

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...

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...