Meetings and Events

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).

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)