Get Involved

Useful Links for Patients

On this page you can find out about:


    • Patient Organisations

    • NHS

    • Medicine safety

    • Benefits & Employment

    • Health Guidelines

    • Making a complaint

    • Legal advice


For links to health issues related to your conditon please visit our Information A-Z 


Patient Organisations

Addison's Disease Self Help Group
The ADSHG is the UK support group for men, women and children diagnosed with Addison's Disease (or adrenal insufficiency).

AMEND, the Association for Multiple Endocrine Neoplasia Disorders, is a UK registered charity supporting patients with Multiple Endocrine Neoplasia and associated growths, their families and friends. Tel: 01892 516076

Association Vivre Sans Thyroide
Forum for French patients living without a thyroid

British Thyroid Foundation
A patient led association for those with thyroid disorders. Telephone: 01423 709707 / 709448  Email: info@btf-thyroid.org  Telphone support contacts

Butterfly Thyroid Cancer Trust
Butterfly Thyroid Cancer Trust is dedicated solely to the support of people affected by Thyroid Cancer in the UK. Helpline 01207 545469.

CancerHelp UK
The patient information website of Cancer Research UK.

CLIMB - Children Living With Metabolic Diseases
UK umbrella group providing information and support for parents, carers, professionals and patient support groups.

Contact A Family
Contact a Family is the only UK-wide charity providing advice, information and support to the parents of all disabled children - no matter what their disability or health condition. Freephone Helpline on 0808 808 3555

Crohn's and Colitis UK
Calcium absorption problems? Crohn's and Colitis UK aims to improve life for everyone affected by Inflammatory Bowel Disease (IBD), the most common forms being Crohn's Disease and Ulcerative Colitis.

DiGeorges syndrome, 22q11
Yahoo group - 22q11 and You

The Diseases Database

European Thyroid Association
Aims to promote and improve knowledge of the thyroid field.

Genetic Alliance UK
A national alliance of patient organisations with a membership of over 130 charities which support children, families and individuals affected by genetic disorders. HPTH UK is a member.

Managing Long Term Conditions
A  forum for all those involved with people livig with long term conditions

Max Appeal - for children with DiGeorge syndrome,VCFS and 22q11.2 deletion
Charity website run by parents for parents

The National Osteoporosis Society
The National Osteoporosis Society is the only national charity dedicated to improving the prevention, diagnosis, and treatment of this fragile bone disease for women and men. Helpline 0845 450 0230 or 01761 472721

National Parathyroid Education Foundation
The Foundation provides educational services to doctors and patients via publications in medical journals, lay media, websites, blogs, and video while providing social networking tools which allow patients to connect and self-educate for a healthier life.

NET Patient Foundation
Information and advice to those affected by neuroendocrine cancer 

Patient UK
A directory of UK health, disease, illness and related medical websites that provide patient information. HPTH UK have co - authored the pages on Hypoprathyroidism and Hyperparathyroidism.

Rare Disease UK
The national alliance for people with rare disease and all who support them.

Rarer Cancers Forum
Information website and forum for those with rare and less common cancers

Sense About Science
A charity that works with scientists and members of the public to change public debates and to equip people to make sense of science and evidence.

Thyroid Cancer Alliance
A global alliance of thyroid cancer support organisations including Hypopara UK. See here 

Thyroid Cancer Support UK
HPTH  UK's sister group - an online yahoo forum for all those affected by thyroid cancer

Thyroid Federation International
The Federation works for the benefit of those affected by thyroid disorders throughout the world

UK Self Help Group Directory

Word on Health
Website of health news, profiles and radio interviews and podcasts with leading healthcare organisations or patient groups, and links to a multitude of disease areas.

You and Your Hormones

A new 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.



NHS Direct
Symptom checker and advice Tel 0845 4647

NHS Choices
Health information for the public: local services, health A-Z, healthy living advice, advice for carers, health news. You can give feedback.

Your rights to choice

Find a GP, hospital, dentist & other health services

NHS constitution


Medicine safety

The Yellow Card Scheme
Please report any side effects from medicines here to the MHRA

An executive agency of the Department of Health that enhances and safeguards the health of the public by ensuring that medicines and medical devices work and are acceptably safe.


Health Guidelines

An independent organisation responsible for providing national guidance on promoting good health and preventing and treating ill health.


Benefits & Employment

The Department for Work and Pensions (DWP)

The Benefits Enquiry Line 
Tel 0800 882200

Disability Living Allowance
Some people with severe HPTH are eligible for DLA- see check list here

Disability and Employment
Latest regulations on your rights at work - Equality Act 2010

Citizens Advice Bureau

Benefits advice guide
The benefits online advice page

Employment Advice Guide
The employment online advice guide


Making a complaint

How to complain about NHS treatment or care

Patient Advice & Liason Service

The Patient's Association
A national charity providing patients with an opportunity to raise concerns,get advice and share experiences of healthcare. Helpline 0845 6084455 or 0208 423 8999

Write to your MP
You can find out about your MP here and contact them by letter or email. Or, your local paper will give 'surgery' times when you can book an appointment with your MP.

Health Ombudsman
The role of the Ombudsman is to consider complaints that government departments, a range of other public bodies in the UK, and the NHS in England, have not acted properly or fairly or have provided a poor service.


Legal advice

"Pro bono" is the term for free legal help for someone who cannot afford to pay for legal assistance and is not entitled to legal aid.

Legal Advice finder
Find legal advisers or solicitors near you

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