Rare Disease Day - 28th February 2015

Online Community

Due to the lack of activity on our online forums, we have taken the decision to remove this resource.

With all the social media tools now available, such as Facebook, Twitter, Instagram… it has made the forum redundant.

We do have a private discussion group on Facebook for our members and also a Facebook page which you can follow to gain up to date information on the support group and research. The Facebook group is only open to registered members so please register here first.