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

We are pleased to announce that the FDSSUK Annual Conference will run for two days this year and it promises to be packed full of information to help patients and family/friends understand and deal with Fibrous Dysplasia and McCune Albright Syndrome. The event is taking place on Saturday 1st and Sunday 2nd June at The John McIntyre Conference Centre at Edinburgh University.

Your tickets can be ordered via Eventbrite via this link.

FDSSUK welcomes three leading doctors from the US:

Dr Michael Collins – Endocrinologist, Chief of Skeletal Studies at the National Institute for Health, Bethesda, MD, USA

Dr Robert Stanton – Orthopaedic Specialist at Nemours Children's Hospital, 13535 Nemours Pkwy, Orlando, FL, USA

Dr Jason Malone   Orthopaedic Surgeon at Nemours Children's Hospital, 13535 Nemours Pkwy, Orlando, FL, USA

All three doctors will be presenting along with UK Specialists with focus on different topics for either day. More details regarding the presentation topics for Saturday and Sunday will follow with a detailed agenda.

The Drs have agreed to carry out a clinic where you can have a private one to one consultation with them. If you would like to have one of these sessions, please let us know as soon as possible on the eventbrite form and by emailing lossieglen@gmail.com. These sessions will run alongside the conference on both days and will be time slot allocated.

All tickets include lunch. Please let us know if you have any dietary or accessibility requirements.

There are various types of accommodation available on site and there is a discount code that you can use to obtain 15% off the price when booking online, if you are attending the event. Details of the accommodation can be found here. The discount code is EVENT.

Free parking is available on site and the venue is fully accessible.

For any further information or queries please contact hev_dickson30@yahoo.co.uk.

We hope you can make it.

Fibrous Dysplasia Support Society Annual Meeting, 17th November 2018

Photo taken during FDSSUK's AGM 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 Facebook Page
(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

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 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.