Adult Rare Bone Disease Network
Adult Rare Bone Disease Network
FOP Friends is proud to be one of the founding six charities which make up the Adult Rare Bone Disease Network, a Rare Disease Collaborative Network. Together, the aim is to improve care, raise awareness, and ensure that no adult living with a rare bone disease feels isolated or overlooked.
What is a Rare Disease Collaborative Network (RDCN)?
Rare Disease Collaborative Networks (RDCNs) are a key NHS initiative aiming to improve care for people with rare conditions. These networks, formed by groups of specialist healthcare providers (Rare Disease Collaborative Centres), focus on specific rare diseases.
The core principle is to share expertise, ensuring that specialised knowledge reaches patients rather than requiring them to travel extensively. RDCNs drive research, increase understanding, and aim to better patient experiences. They’re especially crucial for very rare conditions where expertise is limited, often working with national and international partners.
Each RDCN sets its own goals, supported by NHS England’s Highly Specialised Commissioning team, and reports on its progress annually to improve care across the UK.
You can learn more about RDCNs here: NHS England – RDCN
What is the Adult Rare Bone Disease Network?
The Rare Bone Disease Network (RBDN) is a UK-wide initiative bringing together healthcare professionals, researchers, patient organisations, and individuals affected by rare bone conditions. Its aim is to improve care and support for adults living with these complex conditions, including FOP.
The RBDN is led by the Brittle Bone Society and Metabolic Support UK, and was co-founded by six national patient organisations: Brittle Bone Society, Metabolic Support UK, FOP Friends, FDSS, Soft UK, and XLH UK. By working together, these charities are building a stronger, more connected community that champions the needs of adults living with rare bone diseases.
Why was the network created?
Many adults with rare bone diseases experience a sudden drop in support once they leave paediatric services. The transition to adult care can feel disjointed, with few clinicians having the expertise needed. The RBDN was created to address this gap, ensuring adult patients receive lifelong, joined-up, person-centred care.
What does the network do?
The RBDN promotes collaboration between specialists, shares clinical best practice, and helps develop clear care pathways. It works to raise awareness, improve services, and ensure patients and professionals are well informed. It’s also a space for organisations and individuals to work together, learn from each other, and amplify their voices.
Why is this important for people with FOP?
FOP is an ultra-rare condition that requires specialist knowledge across many areas of medicine. Being part of the RBDN helps ensure adults with FOP are not forgotten. It means the needs of our friends in our community who are living with FOP are better understood and met, not just in childhood, but throughout life.
How is FOP Friends involved?
As a founding member, FOP Friends represents the voices of people with FOP within the network. We attend regular meetings, both virtual and in person to work alongside others. We aim to shape future services, share resources, and highlight the lived experiences of our community. Together, we’re working to improve care and create a more informed, compassionate system.
Where can I find out more?
You can read more about the Rare Bone Disease Network on the Brittle Bone Society website and Metabolic Support UK.
