Reminder: It’s Ask the NIH Week on the HPS Families listserv

Don’t forget! Gretchen Golas, the nurse practitioner at the NIH that works with pediatric HPS’ers has joined the HPS families listserv for a week to field questions families might have about the NIH or raising a child with HPS. Do you have questions? Gretchen has answers, and if she can’t answer you we’ll help you find the answers. Although the Families listserv is mostly made up of parents of small children right now, it’s open to anyone who is a supporter/caretaker for someone with HPS. It’s a great place to stay up to date on what’s happening in the HPS Network as well as network with other families. If you’re not on the list but would like to join, e-mail hkdawn@yahoo.com. Just let me know who you are and what your HPS relationship is.

Topics Gretchen has fielded so far:
Ear piercing
Treating nose bleeds

Topics currently under discussion:
Eye surgery
Keeping young lungs healthy

Comments

Ratner's Cheesecake

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The next generation with Hermansky-Pudlak Syndrome

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Some good news about Pirfenidone

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Living on the frontlines

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