Support Groups

[nurserynurse28]

Hi, I am wondering if anyone can help me please. I am trying to find out if there is a support group in the Stamford, Lincolnshire area for parents with children who have genetic conditions. I am keen to find out as I am a grandparent of a granddaughter with Ring X Chromosome Syndrome-she has been diagnosed as being as close to full Turner Syndrome as a person can be without actually having it. Thank you for your help.

I don't know anything about your area specifically but you could try asking local children's centres or your granddaughter's health visitor.

Hi, I am from your area and I don't know of any specific support group as there doesn't tend to be a lot down that way. Have you contacted the Lincolnshire parent carer council?

Hi can't help directly,but maybe the Turner Syndrome Support Society could signpost you (appreciate she has Ring X but this was the closest I could find).

Thank you for your response. I appreciate it. I will ask my local childrens' centre and my grandaughters' health visitor.

Thank you for your response. I hadn't heard of the Lincolnshire parent carer council. Do you know how to get in contact with them-is it just a case of googling it?

Thank you for your response. I have spoken to the TSSS and Arlene very kindly sent some information. However, there wasn't any specific information on support groups, just some information on support groups in general-unless I was being thick!!

Thank you. The reason I am asking is to find out whether there are families in the Lincolnshire area who would like to meet up and have a coffee/ tea. I am thinking of starting a support group in this area if there isn't one.

It will just be a case of googling both syndromes with support groups included in the search. There may not be a good UK one, but there maybe some in the US. This is where I started looking for my DD as there was nothing for her syndrome here in the UK back then.