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ChildrensInn1
  • By ChildrensInn1
  • Posted March 16, 2006 at 5:01 pm · 2 replies
  • In HIDS
  • Shared with the public
1 Recommendation

Dear parents, caregivers and Children's Inn residents:

Welcome to the Periodic Fever Syndrome- HIDS discussion group!

By Inn resident demand, we can now help you make connections to other families who also have a child with HIDS that is being treated at the NIH and may be staying at The Children's Inn. Family Exchange is a new pilot program that offers you an opportunity to connect online through The Children's Inn website.

I am a staff member at The Children's Inn and I will be temporarily moderating this discussion group until the group is up and running. Eventually, the moderator role will be transferred to one of you.

We hope this new program will prove to be a helpful, supportive tool for you and your family

Explore topics in this discussion:

Fever

2 replies

afields90

I have a fourteen year old son and four years ago when I first found this website, from a doctor, there was no one on here with a child with HIDS but me. I am so glad that I am now able to talk with other families about this illness. With a condition so rare, and very little medical treatment, a good support group is needed. Thanks for helping us find others.

mommymanda

I'm looking to meet other families who are dealing with HIDS. I have a great support system at home, but I would like to meet others who deal with this disease on a day to day basis also. Having a child with such a rare disease, it's hard to find support beyond your own family.

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