Anyone know of a support group for loss of babies from genetic cause?

[bluebear]

A friend of a friend has recently lost her second baby due to a rare genetic condition that both she and her partner carry..understandably they are grieving for their babies but they would really like to talk to other couples that are/have been in the same situation.
I have a vague remembrance of someone mentioning a suppport group for rare syndromes, anyone any information???
TIA

The Genetic Interest Group might be a place to start. Do they have a name for the condition?

Note that I know of, sounds autosomal recessive..and unlikely to be something there's a test for.
Thanks tamum

Think the one I was thinking of was SWAN (syndromes without a name) but they seem to be more for syndromes which are non-lethal at the neonate stage.

It's most likely the babies had a metabolic problem.

Anyone any ideas?

support groups genetic ?

Has links...but without a name would be hard I suppose.

You mean it's happened twice, bluebear? How awful for them.

Yes Janh, both babies born then lost..so terrible..the theoretical chance of this happening is 25% for every pregnancy but I can only imagine how hard it must be to go through a pregnancy wondering if it's going to happen again.
Thanks for the link.

bump...

Thanks Sue, I'll pass the links on.

I've thought of another one, though they may already have come across it. It's Contact a Family . They say they have about 1000 AR conditions on their books already, although as Janh says without a name it will be hard to get specific support. Wish them luck.