FDSSUK Vision, Mission and Aims

The headline Vision, Mission and Aims of the charity are laid out on the homepage. The explanations below build on these and explain in more details why we have chosen them and what we hope to achieve.

Supporting a better future for Fibrous Dysplasia & McCune-Albright Syndrome (FD/MAS) Patients and Families

• Our work at FDSSUK is driven by the support that we receive from our members. We listen to what our members want and we do our best to make it happen. 
• We aspire to make sure that every patient, carer and their family members feel part of a community. We want to reduce the isolation people with a rare medical condition can feel and bring everyone together. It is important that every patient and their families know that they are not alone in their journey.  We want our members to feel confident in sharing their stories with us in order to help themselves and others.
• We are constantly working to improve our charity and provide our members with the latest news updates. 
• Our events are going from strength to strength and we are always looking for ways to make them better. Member engagement is important to us and we continuously work to improve this.
• We want to be that point of contact, where we can signpost patients to the correct hospital and specialists and offer them support and guidance, as well as supporting research so we can have better tests and treatments for FD/MAS. We want newly diagnosed patients to feel that they have the support of the community behind them.
• We are passionate about building our charity and we look forward to what exciting projects come our way in the future, but we will always be a patient support group and our growing community means everything to us.
• There is a lot to be done and so much to learn about FD/MAS.

Raising Awareness & Supporting the Fibrous Dysplasia and McCune-Albright Syndrome (FD/MAS) Community

• Our passion is to raise awareness for Fibrous Dysplasia and McCune-Albright Syndrome. We are working together with other FD/MAS patient groups all over the world and are working together on projects and sharing information. Together we can get our voices heard around the globe.
• We are attending rare disease events across the UK and highlighting the disease within the medical industry and making friendships with other rare disease charities across the UK. 
• We want to secure funding to be part of future research projects and help find new treatments and drugs. In order to do this we are building relationships with medical professionals, pharma companies and researchers.
• Currently we are focusing on getting psychological support for patients to help them cope with the disease and manage pain. We are locating expert doctors across the UK to help with diagnosis and help ensure that patients get the most appropriate treatment and advice.
• We want to ensure that every child gets the support they need when transitioning from child services to adult services.
• Our work will never stop. It's important that we continue to leave our mark in the world of rare bone disease, in the hope we can help find a cure one day.

• Raising awareness of Fibrous Dysplasia & McCune-Albright Syndrome and offering guidance to those affected by the condition.
• Promoting & contributing to Research into Fibrous Dysplasia & McCune-Albright Syndrome. 
• Finding Specialists who know about Fibrous Dysplasia and McCune-Albright Syndrome around the UK. 
• Establish Support for Fibrous Dysplasia & McCune-Albright Syndrome patients and families.

Our articles of association are provided here also for reference.