The HPS Network and Boston-based Broad Institute have formed a partnership to make genetic testing more available to families impacted by Hermansky-Pudlak Syndrome. The Institute is willing to provide free gene type testing to families in need, or who have not yet...
Newsroom - Articles
HPS Network Participating in the Million Dollar Bike Race
The Penn Medicine Orphan Disease Center (ODC) will host the 8th Annual Million Dollar Bike Ride on Saturday, June 12, 2021 to raise money for rare disease research. The Million Dollar Bike Ride brings over 750 cyclists and volunteers to Penn’s campus to ride either...
Pursue Your Dreams through the #RAREis Scholarship Fund
#Rareis Scholarship Fund- Deadline May 7, 2021 @ 3:00 p.m CDT The EveryLife Foundation for Rare Diseases is pleased to open applications for the second year of the #RAREis Scholarship Fund. Thanks to the support of Horizon Therapeutics plc, one-time awards of $5,000...
International Albinism Awareness Day is Sunday, June 13, 2021
International Albinism Awareness Day (IAAD) is on Sunday, June 13, 2021. This year’s theme and hashtag is #StrengthBeyondAllOdds. On this day, we would like to showcase how resilient and powerful those with albinism are. It is a day to share our voice, show our...
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 members Casey Greer & Cassandra Mendez Ocasio have a Podcast!
Did you know that HPS members Casey Greer and Cassandra Mendez Ocasio have a podcast? The girls tackle what life is like living with a disability, and doing it with style. Some of the topics they have covered is White Can Safety, Dancing With a Visual Impairment, and...
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...
We need you! Research opportunity! Participate in the NIH Symptom Scale Study, for more information email info@hpsnetwork.org
WE NEED YOUR HELP! 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 are reaching out to see if you would be interested in taking part in...