by Lucy Santos on 16 June 2014
The Cri du Chat Syndrome Support Group is guided by the requirements of our members and the wider medical and social community.
We’d like to ask you for a little of your time to help us; by answering our short questionnaire (approximately 10 minutes) you will be helping our committee members make informed decisions about how to move the group forward and how best to utilise the funds raised by our members and generous supporters.
Since the group was originally set up, the Internet has transformed the way that families access information and in turn, the way the support group operates. The early conferences were initially the only place that families could meet and they boosted attendance by relevant professionals presenting recently completed research. The conference, now called the “Family Weekend”, has changed dramatically with fewer professional speakers and now focuses on providing workshops to discuss social, educational and medical needs. The emphasis is on families networking and sharing their experiences and knowledge. The organisation has also established and funded a series of regional get-togethers which has led to smaller, local communities, meeting on a more frequent basis.
Currently the group is still membership based, where families and professionals pay an annual rate to receive benefits including a printed newsletter. Over the last five years membership has moved from being a voluntary donation, to being a set rate dependent on membership category and location.
We now wish to consult members and service users to establish the future direction of the group – in a way that best supports families, particularly with regard to the annual “Family Weekend”.
Thank-you for your time!