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.
FDSSUK Annual Conference, 1st/2nd June 2019 update
We held our annual patients conference on the 1st & 2nd June in Edinburgh. It was wonderful to see so many patients, carers and their families turn out for our event, with the number of attendees reaching 80.
Our attendees travelled to Edinburgh from all over Europe and the UK including Denmark, Ireland, Wales and the South of England. We had guest speakers from the UK, Dr. Kassim Javaid from Oxford and Dr. Zilla
Huma from London and we also had Professor Hamish Simpson from Edinburgh and Dr. Line Caes from Stirling.
It was great to also welcome Gillian, Layla and Leigh from Kyowa Kirin, who sponsored the event.
Fantastic presentations were delivered throughout the weekend by both doctors and patients. There was a wide range of topics covered including Endocrine Issues, Hypnotherapy for Pain Management, Scoliosis in FD,
Surgical challenges in FD and New drugs, bisphosphonates and their side effects. The attendees were also given an update on the Rudy study.
We were very fortunate to be able to offer 30 private family/patient consultations with Dr. Collins, Dr. Malone and Dr. Stanton from the USA along with Dr. Javaid and Dr. Huma from the UK.
A number of the presentations will shortly be available on our website, including the agendas for both days.
Fibrous Dysplasia Support Society Annual Meeting, 17th November 2018
Click for bigger image.
This year's annual meeting was held on Saturday 17th November at Birmingham Children's
Hospital, Steelhouse Lane, Birmingham B4 6NH.
Click here for notes on the meeting,
and here for a few comments from our
(for those who don't have a Facebook Account).
FDSS Annual Meeting, 18/19 November 2017
This highly successful meeting attracted participants from America, Italy, Spain, Ireland, Israel, Wales, Scotland and, of course, England. It
was lovely to meet some of you over the weekend, and we hope you felt it was worthwhile. Several presentations were delivered throughout the weekend, and 33
family/patient consultations were arranged with Drs Collins, Boyce and Stanton. The success of the meeting can be gauged by the large number of appreciative comments we
have received, some of which are listed here.
Dr Collins asked for the following message to be posted to all those who attended the meeting:
Dear FDSSUK meeting attendees,
Jamie (Watson) has passed on to me your gratitude for my attending your meeting. I would like to say that it was a privilege to share, what has to a large extent been my
life's work, with such an amazing group of people. I think I speak for all the doctors when I say that we found you to be an amazing group of people – the
strength, resilience, and love the patients, families, and loved ones have for each other was on clear display and nothing short of inspirational! It was an honour to be
part of such an amazing and successful event.
Sincerely, Michael Collins
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 www.rudystudy.org.
The Fibrous Dysplasia Support Society now has a JustGiving account.
Please click here to donate.
FDSSUK Committee Members, 2018
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
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