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 Updates and News for August – September 2019.
are pleased to inform all our members and FDSSUK followers of the
following updates. Firstly, there is important planning work being
carried out to deliver a medical advisory board. Once in place the
Medical Advisory Board will provide invaluable support and guidance in
the key medical areas the FDSS is involved with. Also we can
announce two new fundraising activities, both of which will provide
much appreciated funds to support all the charities ongoing work.
Full details can be found in the News and Fundraising sections of the website.
Fibrous Dysplasia and Fundraising Awareness – A Reminder
Every voice matters! Spread the word and be heard!!!
Fibrous Dysplasia may not be a common topic of conversation in the
average household, but everyone who loves, lives with, is friends with,
and cares about someone with this disorder can change that!
Now is the time to let your voice be heard! Awareness means taking action!
The time has come for us to tell our stories and raise awareness in
order to make a tremendous difference in the lives of people suffering
We are at a crucial point in our FDSSUK endeavours, and we need to keep
the momentum going. Let’s share our mission through our own experiences.
If you want to get involved in supporting our cause, please help us to
raise awareness and share your own fundraising efforts on Facebook,
Instagram, Twitter; every amount of exposure and platform to share your
The FDSSUK will help you promote your fundraising in all our social
media. There are so many ways to fundraise. Bake sale, coffee mornings,
joining a fun run or marathon, school events, and so much more! We’re
here to support our community in any way we can!
Thank you to everyone who has made a huge effort to fundraise
for the Fibrous Dysplasia Support Society! We can’t make a difference
without your time and contributions and we are so grateful for your
commitment and continued support.
Rare Disease Day, 28th February 2018
and families with rare bone diseases are invited to a meeting at the
Royal National Orthopaedic Hospital, Stanmore, Middlesex on Wednesday
28th February 2018 to discover what research is happening at the RNOH
and to meet others with similar conditions. More information about this
meeting can be found on the Rare Disease Day website and on
FDSSUK Annual Conference, 1st/2nd June 2019 update
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
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
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
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).
Fibrous Dysplasia Support Society Annual Meeting, 17th November 2018
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.
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
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
- 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
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!
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