Next week the HPS Families yahoo group will have a guest member, Gretchen Golas. Gretchen is the nurse practitioner that deals with pediatric HPS patients at the NIH. She’s coming on the list for a week to take questions from parents of children with Hermansky-Pudlak Syndrome (questions about related syndromes would also be welcome).
The HPS Families yahoo group is for parents, friends or others who support people with HPS. Most of the list’s members are parents of young children at this time (but who knows what the future holds).
This is a great chance for families that have never been able to go to the NIH, or who have never been able to attend a conference to learn some basics about HPS and have the chance to send questions to someone who actually sees cases of HPS (and other related syndromes) every day.
If you’re not already on the HPS Families yahoo group, and you’re the parent, friend, supporter etc. of someone with HPS and you’d like to join us, please e-mail me at firstname.lastname@example.org.