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.

Click here for full Medical Information Disclaimer.

Aviva Community Funding 2017

Jamie Watson, a committee member of the Fibrous Dysplasia Support Society, has submitted a project to this year's Aviva Community Funding competition to try to attract funding towards FDSSUK's meeting in November, which is very expensive to organise. To win funding we require as many votes as possible between now and 21st November. The more votes we get the greater the likelihood of reaching the Finals and being awarded some funds.

Please take the time to look at our Project and to vote. Thank you.

FDSS Annual Meeting, 18/19 November 2017

(Agenda, Saturday 18th November | Agenda, Sunday 19th November)

We are very excited and proud to announce we have once again managed to get the very experienced American Fibrous Dysplasia and McCune Albright doctors to attend our meeting on November 18/19 at Birmingham Children's Hospital. Dr Mike Collins, Dr Alison Boyce and Dr Robert Stanton will be attending both days and we have opportunities for families to meet them on a one to one basis whilst they are here. Click here for an event poster.


FDSS AGM, 8th October 2016, Birmingham

This presentation was given at the meeting by Prof Nick Shaw on 'Fibrous Dysplasia in Children'.

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

The Fibrous Dysplasia Support Society now has a JustGiving account.
Please click here to donate.

Photo taken at FD day, March 2007

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.