FDSS Support Publications

We aim to provide a library of support documents, publications and handouts and they will be made available here for use subject to attribution to the FDSSUK.

These leaflets, banners and general support information documents are for use by anyone, however the use of these leaflets must be accredited and referenced to the Fibrous Dysplasia Support Society UK, a patient group & charity for people affected by Fibrous Dysplasia & McCune-Albright Syndrome. The leaflets are provided in both A4 & A5 formats. 

We have created, developed and produced an amazing animation which we think all viewers will agree will be invaluable especially for our younger viewers affected by FD / MAS to both understand and to be educated as to what is happening with their bodies without scaring them. We believe it's also a fantastic piece for adults including medical professionals/students to provide them with a basic understanding of the disease especially when so many haven’t even heard of the condition. Please follow the link here to see the FDSSUK animation.

Dr. M.K. Javaid and our trustee Heather Delaney have shared their experiences of telephone and video consultations. Getting used to something new is always difficult for both the Doctors and the patients. Together, they have written some useful  guidelines to help you get the most out of your appointments.  They have also produced a short video here to accompany these slides with an explanation of the points raised to expand on them for clarification. 

In response to feedback from our members, we have designed an easy to read leaflet for newly diagnosed adults with Fibrous Dysplasia (FD) & McCune-Albright Syndrome (MAS). 

Due to the limited information currently available across the NHS, an FD/MAS diagnosis can be very difficult for newly diagnosed patients, as they can feel alone and confused. Also, for those who are already diagnosed and need support, it's comforting to know that there are other patients out there that can help.

Following feedback from our members, we decided to design a leaflet for children to help them understand their diagnosis. It can be a very scary experience for a child and it is not easy for them to understand Dr's language and medical terms, so we have made our leaflet easy to read. We want children to feel that they are able to ask questions about their treatment and feel confident telling their teachers and friends about their condition. We want to reduce isolation and make every child feel part of our community. We want them to know that they are not alone in their journey with Fibrous Dysplasia/McCune-Albright Syndrome.

We know that being diagnosed with Fibrous Dysplasia/McCune-Albright can be a very difficult and confusing time. We took our members feedback and our specialist Dr's comments on board, and have designed this leaflet. Newly diagnosed patients and their families often come across Dr's who have limited knowledge of the disease, and don't know which way to turn. We would like every new patient to get the support they need. If every Doctor, in every hospital, could give out this leaflet, then we can help. There is a whole community waiting.

We have had a banner logo professionally produced here which can be used as a poster if required. It symbolises the community as a whole and our desire to support the drive to find a cure for the diseases that our charity was set up for.