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
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
Bruck Syndrome Charity (Registered UK Charity Number 1216729) is a small but mighty organisation dedicated to supporting individuals and families affected by a rare genetic disorder that causes brittle bones and joint contractures. To fund our vital support groups, financial grants for families, and future research, we need to tap into trust and foundation funding.
We are looking for a highly organised and persuasive writer to help us identify and apply for small grants. If you love researching, organising information, and telling compelling stories, your skills could directly fund life‑changing equipment and support for our community.
What You Will Do
- Prospecting: Research and identify family trusts, foundations, and corporate giving programs that align with our mission (rare diseases, disability support, medical research).
- Drafting: Write compelling, clear, and concise grant applications or letters of inquiry based on our existing charity data and goals.
- Tracking: Help us maintain a simple spreadsheet tracking application deadlines, requirements, and responses.
Qualifications
- Excellent written communication skills with a persuasive, professional tone.
- Highly organised and capable of independent research.
- Previous experience in grant writing, technical writing, or academic research is a huge plus, but not required if you are a strong writer willing to learn!
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