Any child out there with Russell-Silver Syndrome?

[Amiable]

I have friends whose daughter has recently been diagnosed with Russell-Silver Syndrome - a very rare chromosomal condition. They do not know of anyone else in the UK with the condition, and I would like to help them find some mutual support. Does anyone on Mumsnet know of any families who have a child with it, and who would want to talk to someone else in the same situation? Thanks.

When I was a school nurse a child at one of my schools had RSS.

There's a bit more information here about it

Here's a support group

Hi! My daughter is 8 and has RSS. Have your friend check out the MAGIC Foundation. www.magicfoundation.org . They are a wonderful support group for families. Also they have an AWESOME book that tells all about RSS and what you can do to treat it. Who to contact and lots of personal stories and pictures. THey can also find other families in her area to connect her with!

There is also a group online that she can talk to.

health.groups.yahoo.com/group/RSS-Support/

My daughter is doing great. After finding MAGIC she went from tiny.... to normal! And she is SO much healthier!!