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:...

HPS Network collaborates with the Rare Lung Disease Consortium to accelerate research

The Hermansky-Pudlak Syndrome Network (HPS Network) has formed a collaboration with the Rare Lung Disease Research Consortium to accelerate research on Hermansky-Pudlak Syndrome. “We are very excited about this project that will enhance our research efforts on the lung disease of HPS,” says HPS Network President and Founder Donna Appell, “It will offer our community opportunities to participate in research that will help prepare us for future treatment trials and enable the engagement of more...

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:...

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