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...

HPS community attends patient day at the American Thoracic Society Annual Meeting

    A group from the HPS Network attended Meet the Experts, a patient program held at the American Thoracic Society’s annual meeting by the Public Advisory Roundtable in May. This year’s theme was “The Role of Patients in Advancing Treatments and Cures.” Sessions covered various aspects of participating in research, from what questions to ask to what it means to participate in a patient registry.   After lunch, the audience broke into different groups to discuss their particular disease state....

HPS Network sends medical supplies to Puerto Rico

The HPS Network raised nearly $3,500 to help with relief efforts in Puerto Rico after hurricanes Maria and Irma. After being in contact with some of our friends in the medical community regarding what was needed, the Network purchased medical supplies and sent them, with HPS Network Board of Director member Hilda Cardona, to Puerto Rico. The Appell family helped to encourage donations by offering a $1,500 matching grant. Puerto Rico has a long way to go to recover from these devastating...

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