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 Updates and News for August – September 2019.

 

We 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.

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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 from FD/MAS.

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 story matters!

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.

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

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.