UK Patient Resources and Support Groups for those with Endocrine disorders

Patient Support Group for Endocrine Conditions
on Thu 3 Aug

 

You may feel very alone when you’re initially diagnosed with an endocrine disorder. Fortunately, there are many UK based information resources and support groups out there, many of which are additionally backed by further Facebook Groups.

 

An excellent general resource for all endocrine conditions is provided by the Society for Endocrinology. You & Your Hormones is a web-based project by the Society for Endocrinology that aims to give patients and the general public access to reliable online information on endocrine science.

www.yourhormones.info

 

Please find below a list of other helpful websites that are there to support those suffering from thyroid problems, diabetes, polycystic ovary syndrome (PCOS) and related endocrine conditions. These are listed in alphabetical order:

 

Addison’s disease

This ADSHG website (Addison’s disease self-help group) has a lot of information and resources: www.addisons.org.uk

 

Diabetes mellitus

Diabetes UK is the largest charity in the UK devoted to the treatment and care of people with diabetes and looks improve the quality of life for people with the condition: www.diabetes.org.uk

 

Previously referred to as the Juvenile Diabetes Research Foundation, the JDRF offers support and a voice to people with type 1 diabetes and their families. Information includes a pack for children who have recently been diagnosed with type 1 diabetes: www.jdrf.org.uk

 

Endocrine disorders in children

The British Society for Paediatric Endocrinology and Diabetes aims to improve the care of children and young people with endocrine disorders and diabetes. There is a good resources page: www.bsped.org.uk

 

Hypoparathyroidism

A patient organisation for adults & children living with a parathyroid condition in the UK and Ireland. Hypopara UK offers friendly support and reliable information about all types of hypoparathyroidism: www.hypopara.org.uk 

 

Multiple endocrine neoplasia

The aim of this website is to direct you to information you can trust on multiple endocrine neoplasia (MEN) types 1, 2, and 3, medullary thyroid cancer (MTC), familial medullary thyroid cancer (FMTC), adrenal gland tumours (phaeochromocytomas), parathyroid hyperplasia, paragangliomas, familial isolated pituitary adenoma (FIPA) and succinate dehydrogenase (SDH) disorders: www.amend.org.uk

 

Osteoporosis

The UK National Osteoporosis Society provides up to date information on new treatment options in osteoporosis: www.nos.org.uk

 

Polycystic ovary syndrome

A self-help group for women with polycystic ovary syndrome (PCOS).  The group was established in 1997 to share the truth about the condition and improve the lives of women living with PCOS: www.verity-pcos.org.uk

 

Pituitary disorders

The Pituitary Foundation is a national UK charity, which is working to provide information and support to those living with pituitary disorders, including patients, their relatives, friends and carers. There are several information booklets available including those on Cushing’s disease, Living with Hypopituitarism for teens; Diabetes Insipidus and Acromegaly: www.pituitary.org.uk

 

Prader-Willi Syndrome

The International Prader-Willi Organisation is committed to enhancing the quality of life for people with PWS and their families, giving children the best possible opportunities for living their lives to the fullest. There are links on this site for national Prader-Willi support groups around the world: www.ipwso.org/

 

Premature ovarian failure

The Daisy Network provides support for women who have an early menopause before the age of 40 years: www.daisynetwork.org.uk

 

Thyroid cancer

The Butterfly Thyroid Cancer Trust is the first registered charity in the UK dedicated solely to the support of patients with thyroid cancer: www.butterfly.org.uk

 

The Thyroid Cancer Survivors’ Association provides a broad range of free support services, publications, and events to help thyroid cancer patients, their families, caregivers, and friends: www.thyca.org

 

Thyroid disorders

The British Thyroid Foundation (BTF) is a charity dedicated to supporting people with thyroid disorders and helping their families and people around them to understand the condition. There are many helpful guides, leaflets and factsheets: www.btf-thyroid.org 

 

Thyroid eye disease

 The Thyroid Eye Disease Charitable Trust (TEDct) aims to provide information, care and support to those affected by thyroid eye disease such as Graves’ orbitopathy: www.tedct.org.uk/

 

I hope you have found these helpful.

 

Although every effort is made to ensure that all health advice on this website is accurate and up to date it is for information purposes and should not replace a visit to your doctor or health care professional.

As the advice is general in nature rather than specific to individuals Dr Vanderpump cannot accept any liability for actions arising from its use nor can he be held responsible for the content of any pages referenced by an external link

 

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