Help us improve life for people with Bruck Syndrome.

Services

Help us improve life for people with Bruck Syndrome.

Health Support

At Bruck Syndrome, we aim to provide comprehensive health support for individuals and families affected by Bruck syndrome. As a registered charity (no. 1216729), we offer:

Information and Resources: Clear, reliable information on medical treatments and management strategies for Bruck Syndrome.
Financial Assistance: A grant-making programme to help cover the costs of specialised equipment and therapies. In accordance with our Internal Financial Controls Policy, payments for beneficiary grants will effectively be made directly to the supplier or provider upon receipt of an invoice, rather than to the individual applicant, to minimise diversion risk and ensure funds are used correctly.
Counselling Support (Referral): Recognising the need for professional emotional support, we will not provide counselling directly. Instead, we will operate a referral model, signposting families to a vetted list of independent, professionally accredited counsellors. We may offer grant funding to help cover the costs of these sessions

Support Groups

Join Our Discord Support Group

Join our Discord community to connect with others affected by Bruck syndrome. The group is actively moderated by trained volunteers to ensure it remains a safe, confidential, and supportive space for everyone. Here’s how to get involved::

Step 1: Create a Discord Account: If you don’t already have one, sign up for a free Discord account at discord.com.

Step 2: Join Our Server: Click on the invite link to join our Discord server: https://discord.gg/Y3gVmgfCKT

Step 3: Introduce Yourself: Once you’re in, introduce yourself in the #introductions channel. Share your story, ask questions, or simply connect with others who understand what you’re going through.

Step 4: Participate: Engage in discussions, join scheduled chats, and take part in community events. Our Discord server is a safe space for sharing experiences, offering support, and finding solidarity.

Hands-On Casework Advocacy

"Apply & Hand Over" Service

When you are caring around the clock for a child with a complex, life-limiting condition or severe orthopaedic and neurological needs, finding the time and energy to battle through 30-page grant applications, statutory social care referrals, and NHS funding panels can feel impossible.

At Bruck Syndrome (Registered Charity No. 1216729), we don't just signpost families and leave them to figure out the paperwork alone. Through our Apply & Hand Over Advocacy Service, our team steps in to carry the administrative burden while keeping parents firmly in control of their child's care:

Clinical Evidence Consolidation: With explicit UK GDPR parental consent, we review and organise years of complex hospital letters—across metabolic, neuro-orthopaedic, physiotherapy, dietetic, and speech therapy teams—into a single, cohesive clinical profile.
Statutory & Care Funding Referrals: We draft heavily evidenced requests to trigger NHS Children and Young People’s Continuing Care (CYP CC) checklists and complete local authority Service for Disabled Children (SDC) referrals for Short Breaks and specialist interventions.
Grant & Specialist Equipment Applications: As a registered referring organisation, we submit crisis and quality-of-life applications to national funders—including Family Fund, the BBC Children in Need Emergency Essentials Programme, and specialist equipment charities—for beds, white goods, sensory aids, family breaks, and bespoke disabled car seats.
Wish & Hospice Liaison: We coordinate with tertiary hospital partners (such as Great Ormond Street Hospital) to initiate Make-A-Wish UK referrals and act as a culturally sensitive advocate to help families access children's hospice services such as hydrotherapy and sibling support.

How Our 4-Step "Apply & Hand Over" Works

Step 1: One Simple Consent Mandate: Parents sign a single, UK GDPR-compliant Parental Consent & Referral Mandate authorising our charity to prepare and submit specific applications on their behalf.
Step 2: Building the Evidence Vault: Parents share photos or scans of their existing clinic letters once. We extract the clinical evidence, map it against statutory eligibility criteria, and never chase busy parents for information we can find in their reports.
Step 3: Multi-Agency Submission: Our charity writes and submits the applications, cover letters, and clinical checklists directly to the NHS, local council disability teams, and grant-making bodies.
Step 4: Direct Handover to Parents: The moment an application is logged or approved, we step back so all grant awards, Short Breaks cards, wish discovery calls, and care packages go 100% directly to the parents. We securely delete the family's medical and financial attachments once the process is complete.

Case Study in Action: Supporting Barley’s Family

The Challenge

Barley is a bright, determined 6-year-old girl in Enfield who loves music, singing songs, and splashing in the swimming pool with her dad. She lives with an ultra-rare, life-limiting neurometabolic condition (Ethylmalonic Encephalopathy) alongside a complex neurodisability, dystonia, spasticity, and bilateral hip dislocations requiring staged reconstructive pelvic and femoral osteotomies at Great Ormond Street Hospital (GOSH).

Barley is non-ambulant, relies on a wheelchair and standing frame, bruises easily due to microvascular fragility, and experiences severe sleep disruption that impacts her feeding and growth. Despite caring for a child with high-dependency daily needs across more than five hospital trusts—and navigating medical appointments where English is not the household's first language—her parents had no social worker, no respite or short breaks, and no suitable specialist car seat to safely transport Barley as she grew. Overwhelmed by nearly 80 pages of technical clinic letters, the family just wanted to focus on loving Barley and making precious memories together.

How Bruck Syndrome Stepped In

Working under our Apply & Hand Over mandate, our charity took over the entire administrative load so Barley’s mum and dad could focus on her recovery from major hip surgery:

Synthesising 4 Years of Medical Records: We reviewed dozens of multi-disciplinary reports from GOSH, Royal Free London, UCLH, RNOH Stanmore, and Enfield’s Child Development Team (Cedar House), translating complex clinical findings into clear, eligibility-focused application statements.
Triggering Statutory Health & Social Care Support: We submitted a formal, domain-mapped clinical request to her neurodisability team and the local NHS Integrated Care Board (ICB) to initiate an NHS Children and Young People’s Continuing Care assessment, alongside a referral to Enfield Council’s Service for Disabled Children (Cheviots) for Short Breaks funding and intensive sleep support.
Unlocking Grants, Equipment & Wishes: We initiated applications across Family Fund and the BBC Children in Need Emergency Essentials Programme for essential household support and a family memory-making break, liaised with her occupational and physiotherapy teams to evidence funding for a specialist postural car seat, and contacted her GOSH metabolic team to route a Make-A-Wish UK referral.
Bridging the Gap to Hospice Hydrotherapy: Although Barley had been accepted by Noah’s Ark Children’s Hospice, her parents initially felt anxious about engaging with a service carrying the word "hospice". We acted as a reassuring, culturally sensitive bridge—explaining how the hospice's warm-water hydrotherapy pool and sibling support for her older sibling could bring joy and comfort to the whole family, and offering to attend their introductory visit alongside them.

"Our mission is to make sure no family raising a child with complex rare and orthopaedic needs is left to fight the system alone. By turning a mountain of hospital letters into coordinated action, we help families unlock the care, equipment, and joyful moments their children deserve."

Mahdi Koutizadeh, Founder & Chair of Trustees

Ready for Help? Let Us Take the Paperwork Off Your Hands

How to Get Started in 3 Simple Steps

Send Us a Quick Message: Use our short contact form below (or email us directly) to tell us a little bit about your child and what kind of support you are looking for. If English is not your first language, let us know—we are happy to translate complex information and help arrange interpreter support for your appointments.
E-Sign One Simple Consent Form: We will send a single, mobile-friendly UK GDPR Parental Consent & Third-Party Referral Mandate straight to your phone or email for an electronic signature. This gives us permission to write and submit initial referrals on your behalf while ensuring all grant awards, Short Breaks cards, and care packages are handed 100% directly back to you.
Snap & Share Your Letters: Simply take clear smartphone photos or upload PDFs of your existing letters. We extract all the medical and therapy details ourselves so you never have to spend hours filling in forms.

What Documents Will We Ask For Later? (No need to have these ready today!)

Once we have had an initial chat, we will help you pull together a simple Evidence Vault using whatever documents you already have at home:

Recent Hospital or Clinic Letters: Any reports from your child’s paediatrician, hospital consultants, physiotherapist, occupational therapist, dietitian, or speech and language therapist.
DLA (Disability Living Allowance) Letter: Your most recent award letter showing your child’s care and mobility rates (if they currently receive DLA).
Benefit Award Statement: A recent Universal Credit, Child Tax Credit, or Income Support statement (only needed if we are applying for means-tested grants like Family Fund or Emergency Essentials).
EHCP (Education, Health and Care Plan): A copy of your child’s current or draft EHCP, if they have one.