IMPORTANT: THE FIBROUS DYSPLASIA SUPPORT SOCIETY (FDSS) does not make any medical recommendations. Its members are FD sufferers or carers who have no medical qualification, just their own anecdotal experiences and knowledge which is shared for support purposes. Any information provided by FDSS must therefore be treated as just information, not medical advice. No action should be taken as a result of any information provided or implied by FDSS without first seeking qualified and thorough medical advice.
Call for action!
Doctors in Oxford have been working with the FDSS on the RUDY study (Rare UK Bone, Joint and Blood Vessel Study). The aim of this study is to improve understanding of all aspects of rare bone diseases with the aim of developing new tests and treatments to improve patients' lives. They have now opened recruitment to all adults and children with Fibrous Dysplasia. They are particularly researching adults with and without pain from their bone cysts. If you are interested in finding out more including how to register please check the library on RUDY's website www.rudystudy.org.
The Fibrous Dysplasia Support Society (FDSS) was formed in 2007 by a group of patients, and their carers, who are affected by Fibrous Dysplasia, McCune Albright Syndrome (MAS) or Cherubism. It exists to provide information and support by sharing our knowledge and experience of the condition with those who would like to know more.
FDSS has no direct medical involvement or funding. It is currently funded by donations. These donations are then used to provide resources, such as this website, and other activities such as meetings.
The aims of FDSS as stated in its constitution are:
- To encourage, promote and assist a better understanding of Fibrous Dysplasia (including its associated conditions) and its possible treatments among patients and their carers.
- To promote increased awareness of the condition amongst medical professionals.
- To actively encourage people with the condition to meet others affected and to share their experiences.