NEWSROOM
Join Our Team of Advocates
Did you know the HPS Network advocates for federal research funding? Rick Bowman has been championing this cause for us and he needs your help. We're gathering a team of advocates to help secure federal resources for Hermansky-Pudlak Syndrome research. The HPS...
2023 Lung Disease Week at the ATS
The American Thoracic Society (ATS) Public Advisory Roundtable (PAR) is hosting its eleventh annual “Lung Disease Week at the ATS” series this year. This is a society-wide initiative that recognizes the many lung and airway disorders for which ATS PAR member...
Clinical Trial Readiness Webinar
On Thursday, November 10th, the American Thoracic Society (ATS) presented as part of the “Lung Disease Week at the ATS” initiative – a program designed to facilitate information exchange between patients and experts on matters relating to lung and airway disorders....
HPS Story featured on The Story Collider
HPS Network Founder and Executive Director Donna Appell recently shared the HPS story on The Story Collider, a podcast featuring personal stories related to science. The Story Collider was featuring stories from Rare As One, a project of the Chan Zuckerberg...
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
This meeting was held June 10, 2022 and brought together representatives of the FDA, pharma and other interested parties to listen to the needs of the HPS community. The report that will come from this meeting will be used by the FDA and pharma to help analyze the...
Special Strain of Mice to Study Human Disease
Research continues as shown by this article. A murine model(special strain of mice to study human disease) has been developed for the study of HPS pulmonary fibrosis. A different mode of putting Bleomycin ( a chemotherapeutic antibiotic) into the mice model was...
Update on Medical Device Nonvisual Accessibility Act (H.R. 4853)
Progress has been made finding co-sponsors for the Medical Device Nonvisual Accessibility Act (H.R. 4853). The National Federation of the Blind, the organization leading the effort on this bill, held their annual Hill Day and were able to generate some results. Now,...
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...
Medical Device Nonvisual Accessibility Act introduced in the U.S. House of Representatives
U.S House of Representative Jan Schakowsky (D) IL introduced H.R. 4853, the Medical Device Nonvisual Accessibility Act to the U.S. Congress. The bill calls upon the Food and Drug Administration to promulgate non-visual accessibility standards for Class II and Class...
CB1R and iNOS are distinct players promoting pulmonary fibrosis in Hermansky–Pudlak syndrome
View the article at: https://onlinelibrary.wiley.com/doi/10.1002/ctm2.471 CB1R - and - INOS (Download this full article in a PDF printable format. 20 pages.) Click this link or the image below to access the full article.
HPS Network partners with NIH to create HPS Fellowship
The HPS Network has partnered with the lab of Dr. William Gahl at the National Institutes of Health Genetic Research Institute to create a post/doc position devoted to gene therapy research of HPS. The donation to cover the salary for two years has been given by the...
HPS Network and Broad Institute Form Genetic Testing Partnership
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...
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...