Donna Appell, President and Executive Director of the HPS Network, joined two other panelists on a company-wide webinar for Blue Cross/Blue Shield as part of its Rare Disease Webinar Series: Patient and Family Perspectives. Appell explained HPS to the audience, and...
Newsroom - Articles
NORD offers Convid-19 financial assistance program
The National Organization for Rare Disorders (NORD), based in Washington DC, has launched a CONVID 19 Critical Relief Program for those with rare diseases. The financial relief program will help meet non-medical, yet critical, expenses. These expenses may include...
HPS Network partners with NIH to create symptom scale tool
Twelve people with HPS or their direct family/caregivers are taking part in focus groups to help refine an HPS symptom scale tool. The tool is a collaboration of the National Institutes of Health and the HPS Network. It will help quantify which symptoms of HPS affect...
Giving Tuesday Now
HPS Network Responds to Urgent COVID19 Need with a gratitude campaign of online giving, Joining #GivingTuesdayNow in Global Day of Giving and Unity. Go Fund Me Donation Page for Giving Tuesday Now We hope that this message finds you all safe during these trying...
COVID-19 Information
The HPS Network is closely monitoring the rapidly evolving developments regarding COVID-19. The World Health Organization has officially declared COVID-19 as a pandemic. Read our PDF for more details.
National Institutes of Health gets $2.6 billion budget boost
On Dec. 20, 2019 President Trump signed into law a legislative package that, among many other national budget items, included a $2.6 billion, or 7 percent, budget increase for the National Institutes of Health (NIH) in 2020, as well as a $636 million budget increase...
Take part in survey to help the rare disease community
The National Organization for Rare Disorders (NORD) is conducting a survey to collect data about the diagnosis and care of people with rare diseases. NORD first conducted the survey in 1989 and then again in 2003. This is a follow up survey to help NORD and...
Christmas Jazz raises money for the HPS Network
JoAnn Criblez and The Jingle Boys entertained an audience of HPS Network supporters at Jingles and Jazz, held Dec. 12 at the Tilles Center Atrium, Long Island University Post. The fundraiser to benefit the HPS Network featured a range of holiday favorites, mostly...
Sabrina Sakoda to speak about her work with the film RARE in Japan
Sabrina Sakoda, president and founder of Dream Bridge, will be at the 2020 HPS Network Conference to talk about her work screening RARE around Japan. Sakoda raised the money to have RARE, a documentary about a drug trial to treat Hermansky-Pudlak Syndrome, translated...
HPS Network outreaches at 2019 American Thoracic Society International Meeting
A team from the HPS Network attended the American Thoracic Society (ATS) Annual Meeting, held May 17 – 22 in Dallas. The group was able to interact with more than 14,000 lung physicians, researchers, and representatives from pharmaceutical companies, at the HPS...