Trusted External Support & Vetted Signposting Directory

Last Updated: 16 October 2026

Alongside our own Helpline, moderated Discord Support Group, and Grant-Making Programme, we signpost families to trusted external organisations. Every external organisation listed below has been vetted by our team against our 5-Point Vetting Checklist to verify that they are a registered UK charity, NHS/statutory service, or accredited professional body providing impartial, evidence-based support:

• Genetic Alliance UK https://geneticalliance.org.uk — The national coalition of charities supporting all those affected by genetic, rare, and undiagnosed conditions in the UK (Registered Charity No. 1114195).

• Brittle Bone Society (BBS) https://brittlebone.org — Registered UK charity (No. 272100) offering practical equipment advice, peer support, and NHS metabolic bone clinic signposting for families managing bone fragility.

• Contact — For Families with Disabled Children https://contact.org.uk — PIF TICK certified UK charity (No. 284912) providing expert advice on Special Educational Needs (SEN), Disability Living Allowance (DLA), Personal Independence Payment (PIP), and family grants.

• NHS 111 & NHS Website https://www.nhs.uk — Official PIF TICK certified NHS health information and urgent non-emergency medical advice (call 111, or 999 in an emergency).

• British Association for Counselling and Psychotherapy — BACP https://www.bacp.co.uk — PSA-accredited register of qualified counsellors. Under our Charity Counselling Referral Model, families affected by Bruck Syndrome can contact us to be referred to a vetted, accredited counsellor.

• Scope & Turn2us https://www.scope.org.uk | https://www.turn2us.org.uk — Vetted national disability charities offering practical advice on home adaptations, accessibility, and financial grant search tools.