Already a member? Sign in
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
Hi;
I am e-mailing for a friend who is still in Boston Children's. Her daughter just got the dx subsequent to a fair amount of liver failure. My son also has a very rare chronic illness and 4 years ago I found a parents group which, as you all know, is invaluable to helping families and parents cope. Is there a parents discussion group I can refer her to? Thanks! Ctottenham in Maine
Posted in:
I am a parent of a child with Wilson's and I am in the Boston area. There are currently no groups but I would be more than happy to talk with your friend.
Wouldn't it be great if we could find a WD support group in every city?? I live near Colorado Springs, CO and if there is one I think the closest would be in Denver> Anyone know of anyone here?
Just FYI; My son has a very rare disease and because it is so rare there is a specific, very active ONLINE parents support community. We rely on this, as do very frightened, very confused new parents. Doesn't anyone want to start an online parent's discussion community? Cara
It would actually be nice to have a small yahoo group just for parents.. I am involved in many different non-profits and it is easier just to get sent general emails daily, then to navigate the whole disscussion board. I am not the most computer savvy person : )
Would you be interested in starting one? The link could be advterised/furnished through this site. Just go to yahoo groups and start it then maybe do a blanket e-mail for all the parents. ONLY ANOTHER PARENT KNOWS WHAT ITS LIKE TO COPE DAILY WITH YOUR CHILD'S ISSUE.
Maybe in the future. I am working a few different things at the moment. It's an idea.... I will post if I get a chance to put that together....
Add to the discussion