We hope that you will find the links to these UK organisations useful. Some of the organisations keep an active presence in Scotland – you may want to contact them to be added to their circulation list for information, events and latest news.
West Dunbartonshire Wellbeing
Are you looking for information to support your wellbeing? Welcome to West Dunbartonshire Wellbeing, where children, young people and their families, and those who work with them will find information to support and improve wellbeing and emotional health. The website not only provides information locally but offers more general information and resources too.
Turner Syndrome Support Society
– Support for girls and women with Turners Syndrome
http://tss.org.uk/
Child Growth Foundation
– UK’s leading charity on children’s growth and endocrine conditions
http://www.childgrowthfoundation.org/Default.aspx
Great Ormond Street Hospital
– Great Ormond Street Hospital (GOSH) is an international centre of excellence in child healthcare. Together with research partner, the UCL Great Ormond Street Institute of Child Health, they host the UK’s only paediatric National Institute for Health Research (NIHR) Biomedical Research Centre (BRC).
Climb Congenital Adrenal Hyperplasia
– Support for people with Congenital Adrenal Hyperplasia (subgroup of Climb)
Hormone Health Network
– The nation’s endocrine patient education resource
http://www.hormone.org/
The Pituitary Foundation
– Support and information for anyone with a pituitary condition
http://www.pituitary.org.uk/
Thyroid disorders are rare in children and newborn babies, however, if your child is diagnosed, it can be isolating and distressing. There is limited information and support for children with thyroid conditions, and for their parents and carers, but BTF is working hard to fill this gap. Please do click on the link as there are some excellent interactive resources for Children and Adults.
Make a wish
– Grant magical wishes to children and young people with life threatening conditions
http://www.make-a-wish.org.uk/
Kallmanns Syndrome Organisation
– Provide information for patients with Kallmanns Syndrome
http://www.kallmanns.org/
Andorgen Insensitivity Support Group
– Provide information and support to young people, adults and families affected by XY female conditions such as complete and partial Androgen Insensitivity Syndrome
http://www.aissg.org/
Association for Multiple Endocrine Neoplasia Disorders
– International patient group to support and inform anyone affected or interested in Multiple Endocrine Neoplasia Disorders
http://www.amend.org.uk/
British Thyroid Association
– Useful Video
Explain Me
– The ‘Explain Me’ website helps improve communication between young people, their parents/carers and healthcare professionals in endocrine clinics
www.explain.me.uk
HealthSketch
This website is a project by junior doctors in the UK. Their aim is to produce health explanation videos that are accurate, engaging and memorable for patients and the general public.
http://www.health-sketch.com/#
Addison’s Disease Self-Help Group
– Membership of the ADSHG is open to anyone with Addison’s or other forms of adrenal insufficiency that result in steroid dependence, family members, friends or anyone with an interest in adrenal medicine
What? Why? Children in Hospital
This website has lots of videos online to help children and young people prepare for their hospital visits including blood tests, cannulas and MRIs.
https://www.whatwhychildreninhospital.org.uk/videos
