If you have a family member that has passed away from Hermansky-Pudlak Syndrome…

I’m putting this announcement in the HPS Newsletter, but I’m also posting it here for some of the regular HPS readers. If you have a family member that has passed away from HPS-related causes and would be willing to agree to share your loved one’s medical records with the National Institutes of Health, please contact the HPS Network at: 1 (800) 789-9HPS.

Researchers at the NIH are currently trying to compile more exact data about the mortality related to HPS in hopes of illustrating to the greater medical community how urgent our situation really is and how badly we need better treatments. I know that seems like a no brainer to those of us that live in the HPS community – but sometimes you’ve just got to be able to provide very exact data to keep the wheels moving forward.

If your family would be willing to contact your loved one’s doctors and help us obtain their medical records, all of us fighting HPS would very much appreciate your assistance in the journey to the cure. If there are any fees associated with this project that are too much for your family, please let the Network know so we can help you.

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Living on the frontlines

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