Patient Resources

Below are links to patient support groups, charities, societies and other websites that may be helpful to patients and their parents/carers. The BSPED does not have responsibility for the content of the websites linked to from this page.

 

Endocrine Resources

Adrenal hyperplasia network AHN Provides support for all ages with Congenital Adrenal Hyperplasia (CAH), particularly adults and teenagers.
Addisons Disease Self Help Group The ADSHG is the support group in the UK and Ireland for people with Addison’s disease or adrenal insufficiency and their families, working to support its those with adrenal failure and to promote better medical understanding of this rare condition.
ALD LIFE ALD LIFE aims to help all affected by or interested in adrenoleukodystrophy and adrenomyeloneuropathy, whether personally or medically.
AMEND Association for Multiple Endocrine Neoplasia Disorders.
Androgen Insensitivity Group Support to young people and adults with complete and partial Androgen Insensitivity Syndrome (AIS).
Anorchidism Support Group The Anorchidism Support Group was formed to serve and support any person, or families of boy's, with congenital (or acquired) absence of the testes.
BritSPAG
The British Society for Paediatric and Adolescent Gynaecology
British Thyroid Foundation The British Thyroid Foundation is a charity dedicated to supporting people with thyroid disorders and helping their families and people around them to understand the condition.
British Thyroid Foundation Patient information Film This film aims to provide a clear explanation to children aged six to twelve years old of the most common thyroid disorders, open a dialogue between parents or carers and their children and signpost them to additional help.
Living With CAH The site provides support for parents, families and carers of people with CAH as well as for CAH sufferers themselves.
Child Growth Foundation The Foundation is the UK's leading charity relating to children's growth
CCLG Aftercure Patient information on the late effects after treatment for childhood cancer survivors
The Daisy Network Patient support group for women with premature ovarian insufficiency
Diabetes Insipidus Foundation Support group
Endocrine Society The Endocrine Society is dedicated to promoting excellence in research, education and clinical practice in the field of endocrinology.
ESE European Society of Endocrinology
ESPE European Society for Paediatric Endocrinology
ESPU European Society for Paediatric Urology
Endolinx Good site for endocrinology news and developments
Explain Me Explain was developed as part of a project to improve communication between young people, their parents/carers and healthcare professionals in endocrine clinics.
The Hormone Foundation The Hormone Foundation is dedicated to serving as a resource for the public by promoting the prevention, treatment and cure of hormone-related conditions.
Hypoparathyroidism UK HPTH UK is the only organisation dedicated to improving the diagnosis, prevention and treatment of hypoparathyroidism and other parathyroid conditions in the UK.
Fertility Network UK Fertility Network UK are the UK’s leading infertility support network, and we’re here to offer information and support to anyone affected by fertility problems.
Intersex Society of North America The Intersex Society of North America is a resource for people seeking information and advice about atypical reproductive anatomies
Johns Hopkins University Division of Pediatric Endocrinology in the Department of Pediatrics at the Johns Hopkins University in Baltimore.
Kallmanns.org This website has been set up to provide information for patients with Kallmann syndrome and their family and friends in addition to any healthcare professionals keen to learn more about this rare condition.
Klinefelters Syndrome Association UK This site exists to support all those affected by Klinefelter's Syndrome (KS).
PES Pediatric Endocrine Society (formally the Lawson Wilkins Pediatric Endocrine Society).
Pituitary Foundation  
Prader-Willi Syndrome Association UK  
RCPCH Leaflets created to inform people about the rare conditions being studied by the BPSU in a straightforward and lay-friendly manner.
Society for Endocrinology  The Society for Endocrinology aims to promote the advancement of public education in endocrinology.
Testosterone Deficiency Centre  
Turner Syndrome Support Society The aim is to offer support & information to girls & adult women with Turner Syndrome, their families and friends.
Verity Verity is a self-help group for women with polycystic ovary syndrome (PCOS).
WHO growth database Global Database on Child Growth and Malnutrition
You & your hormones You & Your Hormones is a website aimed at patients and the general public that provides accurate and reliable information on hormones and hormone-related conditions.

Diabetes Resources

Children With Diabetes   Website and facebook site for families living with Type 1 diabetes.
DiabetesGenes.org  Essential site for non-type 1 diabetes from Andrew Hattersley's group in Exeter. Includes forms for sample despatch and research information.
Diabetes Monitor   Provides information, education and support for people with diabetes.
Diabetes UK   Diabetes UK mission is to improve the lives of people with diabetes and to work towards a future without diabetes.
EZ Diabetes   Products that can help make diabetes easier for children.
Foot.com The latest diabetes news, information on diabetic foot conditions and products to protect and care for your diabetic feet.
Foot in Diabetes UK (FDUK) Foot in Diabetes UK (FDUK) is a multi-disciplinary organisation, for professionals, committed to leading and supporting high quality health care to improve outcomes for people with diabetes related foot disease.
HeallingWell.com   Diabetes Resource Centre.
ISPAD  International Society for Paediatric and Adolescent Diabetes
JDRF International Juvenile Diabetes Research Foundation International
JDRF UK   Juvenile Diabetes Research Foundation UK
Medical Conditions at School For school staff and healthcare professionals supporting pupils with medical conditions
NHS Diabetes   NHS Diabetes is a national organisation supporting improvement in diabetes services.
NHS Direct For health advice and reassurance, 24 hours a day, 365 days a year
NIDDK   National Institute of Diabetes and Kidney Disease
Pumpwear Accessories  Accessories insulin pump wearers