We are raising money to generate awareness of the condition and to provide information and support for people with Fibrous Dysplasia and their carers. Funds are needed to maintain the website and to subsidise our annual meeting.

Updated 24/3/19

Edinburgh Marathon run on 26th May to fundraise for FDSSUK

Michael Cantwell (Chair of FDSSUK) is fundraising for the Fibrous Dysplasia Support Society by running in the Edinburgh Marathon Festival Full Marathon 2019 on 26th May. Please help us support his efforts to raise money for FDSSUK by going to Michael's Just Giving Page.

Mike comments: " I'm planning on running the Edinburgh Marathon on 26 May 2019 in aid of the Fibrous Dysplasia Support Society (FDSSUK). My daughter Kate was diagnosed with the condition 5 years ago and FDSSUK has been instrumental in accessing information that has been invaluable to Kate and our family."


500 donation!

We are delighted that Gillian Findlay chose FDSSUK as her charity of choice when her employer Hoyer Petrolog offered her the opportunity to donate 500 to charity as part of a work placed safety scheme initiative. Thank you so much from all at FDSSUK.


Worldwide swim for FD/MAS 2019


Nish Rai is 18 years old and was diagnosed with mono-ostotic Fibrous Dysplasia in the right femur in 2012. Nish is planning to organise a global sponsored swimming event to raise awareness and funds for Fibrous Dysplasia and McCune Albright Syndrome, and hopes this event will also encourage people with FD/MAS to become more active, improving their physical health. Nish is training for a 10km swim, and will shortly be setting up a website so that people can write their own stories, explain why they want to participate and share how their training is progressing. The swim will probably take place next summer around August so there's plenty of time to prepare! If you're interested in taking part or have any ideas please contact Nish at

Click here for more information about Nish and his plans. Well worth a read!


Wonderful donation of 2500!

We have received a very generous donation of 2,500 from a lady who is very passionate about the support our charity offers those affected by Fibrous Dysplasia and McCune Albrights Syndrome. This lady, who wishes to remain anonymous, has a loved one with Fibrous Dysplasia, who benefits from the advice on offer through the support group. On behalf of everyone at FDSSUK, we thank you very much for your support.


Click for bigger image.

Carol Urwin raises 540 for FDSSUK

Congratulations to Carole Urwin who raised 530 for FDSS by successfully completing this year's Great North Run on 9th September. Carole has been running the GNR for FDSS for about 10 years. Here's hoping she continues to run for us for another 10 years, or even more!

Joanne Mills walks 5 miles for Fibrous Dyslasia Support Society

Joanne's sister, now 21 years old, has suffered from Fibrous Dysplasia all her life. Jo has just completed a 5 mile walk to raise money to support those who suffer from this disease. Please help Jo by donating via her Justgiving Page.

Amazon Smile Donations

You can support FDSSUK by using your existing Amazon account on AmazonSmile. On your first purchase from AmazonSmile you need to select Fibrous Dysplasia Support Society from the list of supported charitable organisations before you begin shopping. 0.5% of the purchase cost will be donated to FDSSUK.

More information here.

Dublin 10km walking/running race success!

Maria Costello fundraising for

We would like to thank Maria Costello who completed the Dublin 10km walking/running race in 1 hour 53 minutes just three weeks after having major surgery and, in doing so, raised 2160 for us. Our thanks go to Maria and to all who supported her, and the FDSSUK, financially. A magnificent achievement.

Click here for a bigger photo of Maria and friends.

Aviva Community Funding 2017

Thank you to everyone who voted for the Aviva Community Funding Project, but, unfortunately, we weren't successful as only the first 200 projects got automatic funding. We weren't quick enough off the mark as a group and our voters encountered difficulties when accessing Aviva's website which kept crashing as people tried to vote for their community projects. Aviva did, however, kindly give us 100 due to the voting difficulties. Maybe next year!

Great North Run Challenge, 10th September 2017

One of our members, Gillian Findlay, and her cousin Sarah Grudzien, ran the Great North Run in September to raise funds for us. So far they have raised over 2000 which is amazing!

Please visit their Just Giving page and donate if you can. Thank you.

Great North Run Challenge, 11th September 2016

Aimee Hargreaves, fundraising for

Congratulations to Aimee Hargreaves and friends who raised the wonderful sum of 2,500 for FDSSUK by running the Great North Run, the largest half marathon in the world, on 11th September 2016.

Click here for a bigger photo of Aimee and friends.

Coast to Coast Cycle Challenge, 23rd May 2016

Congratulations to Jamie Watson, a committee member of the Fibrous Dysplasia Support Society, who, with three others, successfully completed the 175-mile Coast to Coast cycle challenge from Whitehaven to Scarborough. The four day challenge passed through the Lake District, the Yorkshire Dales and the Yorkshire Moors, with some pretty serious climbs involved. Jamie comments:

Thank you everyone for all your support and donations. There were 4 of us in the end that braved blazing sunshine, some monstrous hills, lots of rain on day 3, 2 punctures, a few tears! And some very sore bottoms but we made it and feel very proud. As of today (27/6/2016) the total raised has gone past 4400 (not including gift aid) which we are very excited and proud about and hopefully that will go a large way to funding next year's conference which we hope to bring Dr Collins and his team from the United States back over.

Jamie Watson, a committee member of the Fibrous Dysplasia Support Society, ran the Derby Ramathon 2015 on Sunday 7th June to raise funds for FDSSUK. Congratulations, Jamie, on completing the half marathon, and raising 379.76.

The Fibrous Dysplasia Support Society now has a JustGiving account.
Please click here to donate.

Lottie, fundraising for FDSSUK

Lottie, a patient with Fibrous Dysplasia, is a pupil at the Fireflies dance school in Tunbridge Wells. On the 13th of July the school held a concert and raised 1,400 for two charities, one being the FDSSUK. We are very grateful to Lottie and all the teachers and other pupils of The Fireflies school for their outstanding support for us, shown in their donation of 700.

Click here for a bigger photo of Lottie.

If you already shop online, why not help the Fibrous Dysplasia Support Society at no extra cost from purchases you would make anyway. All you have to do is register with easyfundraising, and start shopping at GAME,, Amazon, Monsoon, Marks and Spencer, WHSmith, Boots, Argos and hundreds of other web retailers, and a donation will automatically be made to the Fibrous Dysplasia Support Society. For future purchases please remember to access the shops' websites via

Click here for a list of other fundraising ideas.