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.

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...