Meetings and Events

Fibrous Dysplasia Support Society Annual Meeting, 17th November 2018

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.  


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

18/19 November 2017. Fibrous Dysplasia Support Society Annual Conference

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

8th October 2016. Fibrous Dysplasia Support Society AGM (Minutes | Medical Notes)

Presentation given by Prof Nick Shaw on 'Fibrous Dysplasia in Children'

3rd October 2015. Fibrous Dysplasia Support Society AGM
Presentations were given by Alison Boyce and Michael Collins on:
'Endocrine Features of FD/MAS', 'Pain in Fibrous Dysplasia'
'Craniofacial FD' and 'Surgical Management of FD'.

11th October 2014. Fibrous Dysplasia Support Society AGM (Minutes)

19th October 2013. Fibrous Dysplasia Support Society AGM (Minutes)

13th October 2012. Fibrous Dysplasia Support Society AGM (Minutes)

22nd October 2011. Fibrous Dysplasia Support Society AGM (Minutes)

16th October 2010. Fibrous Dysplasia Support Society AGM (Minutes)

31st October 2009. Fibrous Dysplasia Support Society AGM (Minutes)