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:...

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)...

Capital Campaign will go out in December

The HPS Network’s Capital Campaign will be mailed in early December. This is our annual general fundraising appeal mailing. Most charities do this, and for most, it is a major part of their budgets. This year the HPS Network lost one of our major fundraisers. It is even more important than ever that we have a successful capital campaign. If you know anyone you’d like us to add to the mailing list for this appeal, please send their name and snail mail address to: info@hpsnetwork.org. Or, if...

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Phone: 1 (800) 789-9HPS
Email: info@hpsnetwork.org

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This Website is intended to provide information. It is not intended to, nor does it, constitute medical or other advice. Readers are warned not to take any action with regard or otherwise, based on the information on this website without first consulting a physician.