Useful Links

Hospitals and Patient Organisations

Improving care for rare inherited and congenital gastrointestinal anomalies. https://www.ern-ernica.eu/

ERN eUROGEN Patient Empowerment

Includes a short illustrated brochure, a full patient journey document, an abridged audio version.

Designed to improve access to information and provide more comprehensive, holistic support for people affected by Anorectal Malformations. https://eurogen-ern.eu/our-work/patient-information/

Great Ormond Street Hospital – VACTERL Association:

https://www.gosh.nhs.uk/conditions-and-treatments/conditions-we-treat/vacterl-association-0/Provides specialist care and information for individuals with VACTERL association and related conditions

IA Friends UK: https://www.facebook.com/groups/768556466870147Facebook support group for adults and parents of children in the UK affected Anorectal Malformation / Imperforate Anus.

Kidney Care UK Ensuring no one faces kidney disease alone.

Max’s Trust: https://maxtrust.org Support for the UK Anorectal Malformation Community

Medics for Rare Disease: https://www.m4rd.org

Scoliosis Support and Research website: https://ssr.org.uk/

If any of these links are broken, on-line content can be viewed by entering the website name in your preferred search engine.

provides practical advice, information, and support to improve independence and quality of life.

TOFS: https://tofs.org.uk/
Lifelong support for people born with

Oesophageal Atresia - Tracheo-oesophageal Fistula.

TOFS: Adult Cuppa & Chat:
Virtual meet up for adults born with OA TOF. Informal peer support group
http://tofs.org.uk/