Treasured HPS Network volunteer Ann-Delia Bayer passes away

Ann-Delia Bayer, a longtime volunteer with the HPS Network, passed away on Dec. 9th, 2017. She is survived by her husband Robert Bayer and her daughters Katrina and Sarah as well as her brother Timothy (Stacie) Valentine and his children Corrine and Jena. Bayer was actively involved in HPS Network events, even though no one in her family was affected by the syndrome. For a decade she managed the kids’ dance party on Friday night at the HPS Network conference. The party gives kids affected by...

HPS Network attends Pulmonary Fibrosis Summit

The HPS Network attended the Pulmonary Fibrosis Summit Nov. 10 – 12 in Nashville, TN. The summit was organized by the Pulmonary Fibrosis Foundation and featured tracks for patients and caregivers, as well as medical professionals. “The content at the Pulmonary Fibrosis Summit was very robust,” says Donna Appell, President and CEO of the Hermansky-Pudlak Syndrome Network, “It was exciting to see so much interest in the genetics behind pulmonary fibrosis, as well as a talk about Hermansky-Pudlak...

HPS Network joins coalition of rare disease organizations to oppose repeal of the Orphan Drug Tax Credit

The HPS Network has joined with the National Organization of Rare Disorders (NORD) and more than 200 rare disease organizations to oppose repeal of the Orphan Drug Tax Credit within the proposed Tax Cuts and Jobs Act. This tax credit is one of the only a few incentives to encourage pharmaceutical companies to develop treatments for rare disorders. Currently, 95 percent of people affected by a rare disorder have no FDA approved treatment, including those with Hermansky-Pudlak Syndrome. Rare...

Purchase coffee and tea to help fund the cure

Sandra Ocasio and her daughter Cassandra Mendez Ocasio are holding an online fundraiser to raise money for the Hermansky-Pudlak Syndrome (HPS). The fundraiser will run through Nov. 14 and is selling various coffee and tea products. “I bought some tea last year to give as Christmas gifts. It was a great way to not just give a gift, but to give a gift that gave twice!” says Heather Kirkwood, Vice President and Director of Communications for the HPS Network. To make a purchase, go to:...

Research Alert: HPS Network tracking medical issues, looking for HPSers with specific characteristics

Valerie Friedman RN and Director of Medical Affairs for the Hermansky-Pudlak Syndrome Network, is tracking several medical issues we’ve noticed among the HPS community. We DO NOT know if they are in any way related to HPS, but would like to collect data that, if significant, could be shared with HPS researchers. If you have any of these medical issues, please e-mail Valerie at vfriedman@hpsnetwork.org and let her know so that she can add it to your profile in our membership database:...

Has your contact information changed?

Please make sure to update your contact information with the HPS Network! We know many families have relocated, even temporarily, because of Hurricane Maria. If we can’t find you, we can’t reach out to you with any developments that might be helpful or important. Please encourage anyone in the HPS community you know who has had a change of address to update their information with the HPS Network. They can e-mail: info@hpsnetwork.org or they can call: (516)...

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Email: info@hpsnetwork.org

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