SWAN - Syndromes without a name

[1980Sport]

For anyone interested!

This was a charity between 1999 and 2009 for Families with undiagnosed conditions - it's been restarted by the Genetics Alliance this year.

Email - [email protected]

Or find them on Facebook!

on.fb.me/iQ5K20 - here's the fb link!

that's good news! The support group for dd3s syndrome had some dealings with the genetic alliance and their research last year, they were lovely people.

Thanks for that sport that was what i was trying to think of a few weeks ago because i could remember such a charity around the time when we were searching for a dx and someone said they were really good.