Adult Rare Bone Disease Network: Resources
The Adult Rare Bone Disease Network brings together patient organisations from across the UK that support people living with rare bone diseases.
Below, you will find links to resource pages from these organisations, offering guidance on topics such as transition to adult services, bereavement, benefits and more. Each listing includes a brief overview of the support available, along with a link to the relevant page if you would like to explore further.
Browse the resources below to find the information most relevant to you:
Metabolic Support
Metabolic Support offers a comprehensive IMD Resource Hub for people living with inherited metabolic disorders and their families.
The page brings together practical guidance on healthcare planning, benefits and finances, education and employment, mental health and wellbeing, housing, social care, bereavement, travel and more. It acts as a central gateway to trusted information and further support to help individuals and families navigate everyday life with an IMD.
Click the button below to navigate to our “Resources for IMDs” page:
Brittle Bone Society
The Brittle Bone Society provide a wide range of information and support for people living with Osteogenesis Imperfecta (OI), as well as families, carers and professionals.
Their Information & Resources hub includes guidance on understanding OI, healthcare and treatment, education, mental health and wellbeing, independent living, benefits and everyday life, alongside factsheets and expert-led content.
Explore their resources via the button below:
XLH UK
XLH UK offers a “Living with XLH” resource hub that brings together accessible guidance for people affected by X-linked hypophosphataemia (XLH) and their families.
It covers key aspects of life with XLH, from understanding the condition and its symptoms, to dental health, physical and mental wellbeing, family planning and personal experiences — with links to more detailed pages on each topic.
Learn more about living with XLH and find practical information by clicking the button below:
FOP Friends
FOP Friends provides a “Living with FOP” section on their website aimed at supporting people affected by fibrodysplasia ossificans progressiva (FOP) and their families.
The page offers trusted information to help you understand life with this rare genetic condition, connects you with a welcoming community, and signposts to practical advice and downloadable guides covering day-to-day challenges, navigating healthcare and support, and learning more about FOP from those with lived experience.
Learn more about living with FOP and find useful support resources
FDSS UK
Fibrous Dysplasia Support Society UK provides information and support for people affected by Fibrous Dysplasia (FD), McCune–Albright Syndrome (MAS) and related conditions.
Their support section provides a range of support resources for people affected by Fibrous Dysplasia and related conditions, including stories, guidane for those recently diagnosed and to accessing FDSS UK support.
Explore their support resources to find information and further help:
