cri du chat syndrome support group
There is a lot of help and advice out there to help you, and families all over the country who are in the same situation.
The Cri du Chat Syndrome Support Group was founded in the mid 1980s by Ann Wilson, a parent of a child with Cri du Chat Syndrome, after discovering there was no support group specifically for this syndrome.
A steering group was formed in 1991, and the group became a registered charity (#1044942) in 1993.
The support group is made up of families and relatives of those with CdCS, as well as research members who have expressed an interest in this condition. However, the group is open to anyone with an interest or need, whether in the UK or abroad.
The group provides information, advice and support through its Clinical Advisory Group, formed by members of the committee and outside professionals.
We receive no government funding and are funded by individual and corporate donations as well as fundraising activities.
It’s very easy to find out bad information online, and we wouldn’t recommend reading everything you find on Google, especially just after diagnosis.
Instead, we try to provide useful and reliable overviews of various topics in our information section.
However, probably the best place for help and advice from fellow CdCS parents is on our Facebook group. It’s full of people in the same situations as you, who are more than happy to give advice, share experiences and provide a shoulder to lean on when things are hard. This group is a private space and you must ask for an invitation to join. Once you have joined only members of the group can see your posts and they will not appear on your feed. If you have any trouble joining this group please email [email protected]
The other main place to get information is at one of our regular events. We organise regional meetups and national weekend-long get-togethers for parents and children, where you can make friends, get advice, and learn more about how best to help your child.
It can be hard to get the courage to come along for the first time, but we promise it’s worth it!
We have families and supporters all over the country, who are often quite happy to meet up and help you through. Please get in touch with [email protected] with details of the age of your child and your postcode and we will do our best to match you up with a family nearby.
In August 2018 we launched our new initiative – CdC Syndrome Community Makers. We would urge all our supporters to join our new community and get involved with the group through micro volunteering to help us raise awareness, much needed funds and to support as many families as we can. More details can be found at http://criduchatsyndromesupportgroup.volunteermakers.org/