Bruck Syndrome Charity (Registered UK Charity No. 1216729) is the only organisation in the UK dedicated entirely to supporting the Bruck Syndrome community. We exist to provide a lifeline to individuals and families navigating the profound challenges of this ultra‑rare genetic condition.
Why We Exist
Bruck Syndrome is uniquely characterised by a combination of severe bone fragility (osteogenesis imperfecta) and congenital joint contractures. Because the condition is so exceptionally rare, families often face a lonely journey marked by a lack of clinical awareness, complex medical needs, and a constant battle for specialised support. We were founded to change this.
Whom We Serve
Our community includes anyone across the UK whose life is impacted by Bruck Syndrome. This includes
- Diagnosed Individuals – from infants requiring early intervention to adults managing lifelong mobility needs.
- Parents and Carers – who manage round‑the‑clock physical care, multiple surgeries, and hospitalisations.
- Extended Families – who need emotional and practical support to navigate the realities of a complex rare disease.
Our Core Values
- User‑Led Expertise – We believe in nothing about us without us. Our leadership and volunteer teams are driven by people with direct, lived experience of Bruck Syndrome. We know the daily realities because we live them.
- Connection and Empathy – We believe no one should face an ultra‑rare diagnosis alone. We foster a safe, understanding space where families can share advice, vent frustrations, and celebrate milestones.
- Practical Impact – Empathy is vital, but so is practical help. We are committed to alleviating the financial burden on families through targeted grants for specialised mobility equipment and physical therapies.
- Forward‑Thinking – We refuse to accept the status quo. We actively advocate for our community within the medical profession and champion vital research into future treatments to improve the quality of life for the next generation.
What We Do
- Provide Active Support – A flexible, dedicated listening and signposting service for families.
- Fund Essential Care – A grant‑making programme for life‑changing mobility aids.
- Drive Research & Awareness – Educating healthcare professionals and funding patient‑centric medical research.
The Opportunity
Community fundraising—like sponsored runs, bake sales, and birthday fundraisers— is the lifeblood of small charities. Bruck Syndrome Charity is looking for a motivational and organised volunteer to help us support the amazing individuals who want to raise money for our cause! If you love championing others, celebrating successes, and organising digital campaigns, you can help us turn everyday supporters into fundraising heroes for the Bruck Syndrome community.
What You Will Do
- Supporter Journey – Be the primary point of contact to thank, encourage, and guide individuals who set up fundraisers for us (e.g., on GoFundMe or social media).
- Campaign Creation – Help us brainstorm and launch one or two virtual campaigns a year (e.g., a Steps for Bruck virtual walking challenge).
- Resource Building – Help us create a simple Fundraising Toolkit (a PDF with tips, our logo, and facts about Bruck Syndrome) to send to our supporters.
Qualifications
- High energy, empathetic, and excellent at building rapport with people online or via email.
- Organised and able to keep track of various community events happening simultaneously.
- Familiarity with peer‑to‑peer fundraising platforms (JustGiving, GoFundMe, Facebook Fundraisers) is a bonus!
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