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.

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Fibrous Dysplasia Support Society Annual Meeting, 17th November 2018

Photo taken during FDSSUK's AGM 2017

Click for bigger image.

We are pleased to announce our annual meeting will be on Saturday 17th November at Birmingham Children's Hospital, Steelhouse Lane, Birmingham B4 6NH and we invite everyone along to meet each other and network with others in the same position and share stories. We have a schedule of speakers as detailed below that we hope you will find informative and beneficial.

We are also pleased to announce that the medical pathway that has been worked on tirelessly will be made available for the first time by Dr Kassim Javaid. This has been developed alongside world experts from all over the world and we hope will become the definitive guide for all UK medical staff.

Lunch will be provided and we look forward to seeing you again or meeting you for the first time!

  Tickets for the day are available here.  

AGENDA

09:00   Registration
09:30   Welcome & Opening remarks
09:45   Dr. Nick Shaw – Overview of Fibrous Dysplasia in Children, Management & Transition from Child to Adult Services
10:15   Dr. Kassim Javaid – Overview of Fibrous Dysplasia in Adults
10:45   Questions
11:00   Break
11:15   Dr. Joseph Abbott – When to Consider Optic Nerve Decompression and Neurosurgical options
11.30   Neurosurgeon
12:00   Heather Ryan – Housing, Jobs and Benefits
12:45   Lunch
13:30   Jane Freebody – Mental Wellbeing for Children, Adult and Carers

What does good psychological support look like? When should you ask for it? What should the NHS provide?

14:00   Dr. Kassim Javaid – Research Update
14:15   Jane Freebody – Physiotherapy and Associated Treatments
15:00   Break
15:15   Feedback from Carers, Parents, Children and Adults –

Discussion on Diagnosis, Children's Problems and Adult Problems

16:15   Summary and closing remarks

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.

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.