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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.

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...

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...

#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...

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...

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...

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...

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...