NEWSROOM

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 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...

  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...

Annual HPS Christmas Concert Jingles and Jazz 2020December 12, 2020 at 7 pm Please click this link to register This year, our annual Jingles and Jazz Christmas Concert will be going virtual. Enjoy an evening of songs and cheer to usher in the Holiday season....

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 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...

Ferring US issued a voluntary recall of DDAVP nasal spray 10 mcg/0.1 mL, Desmopressin Acetate Nasal Spray 10 mcg/0.1 mL, STIMATE Nasal Spray 1.5 mg/mL because of superpotency. Superpotency can cause low sodium levels that could result in seizures, coma or death. If...

The 2020 Rare Artist Contest is open for business! Anyone connected to the rare disease community – patient, caregiver, friend, medical professional etc. – may enter the contest. There are different categories for children, teens and adults. Cash prizes are awarded...

Researchers at the University of Bordeaux’s Molecular Genetics, Rare Disease, Genetics, Metabolism Lab report finding a new gene that causes the HPS type of albinism in the Journal of Genetics in Medicine. They found two individuals with the newly discovered gene, HPS...

Albismo Chile, the organization for families affected by albinism in Chile, invited Carmen Camacho to give a presentation about Hermansky-Pudlak Syndrome (HPS) to its members as part of International Albinism Awareness Day. “I was honored to be asked to give this...

As part of International Albinism Day, Albinos Paraguay invited the HPS Network to give a presentation about Hermansky-Pudlak Syndrome. As flying to Paraguay isn’t possible, Carmen Camacho and Nancy Lee, both members of the HPS Network board of directors, gave an...

Donna Appell, Founder and Executive Director of the HPS Network, was profiled by Global Genes for the month of June as a Rare Leader. The profile summarizes how Appell became interested in Hermansky-Pudlak Syndrome and how she started the HPS Network. The article also...

The HPS Network has acquired a donor management platform, DonorView, as part of the grant award from CZI (Chan Zuckerberg Initiative). The platform will not only help us manage and communicate with our donors more efficiently, but it offers a variety of tools that...

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...

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...

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...

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...

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.

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...

  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...

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, 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...

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...