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
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.
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 living with long term conditions
Max Appeal – for children with DiGeorge syndrome,VCFS and 22q11.2 deletion
Charity website run by parents for parents
The Royal 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
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
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
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.
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.
Professional Associations
Society for Endocrinology
The major British endocrine society for scientists, clinicians and nurses who work with hormones.
International Society of Endocrinology
International organization for endocrinologists and associated scientific professionals in all settings including universities, industry, government agencies, health care facilities, and not-for-profit organizations. Its worldwide membership comprises national endocrine societies from over 70 countries, with head offices at the University of Birmingham.
European Society of Endocrinology
Promotes for the public benefit research, education and clinical practice in endocrinology by the organisation of conferences, training courses and publications, by raising public awareness, liaison with national and international legislators, and by any other appropriate means.
The Endocrine Society
USA based professional society devoted to research on hormones and the clinical practice of endocrinology worldwide.
The British Association of Endocrine and Thyroid Surgeons
The BAETS is the representative body of British surgeons who have a specialist interest in surgery of the endocrine glands (thyroid, parathyroid and adrenal).
British Thyroid Association
Professional clinical specialist doctors and scientists in the United Kingdom who manage patients and/or are researching thyroid diseases.
European Thyroid Association
Professional Association whose aims are to promote knowledge in the thyroid field (fundamental and clinical) and improve knowledge of the thyroid gland and its diseases.
British Society for Paediatric Endocrinolgy and Diabetes An association for patients and professionals to support children with endocrine disorders and diabetes.
British Association of Otorhinolarnygology – Head and Neck Surgery. The site gives patient information on the ears, nose, throat and related conditions of the head and neck. The BAS also set up
ENT UK
Set up by the BAS ( above) ENT•UK represents over 1,300 medical practitioners including surgeons, trainees and audiologists
The Hormone Foundation
USA based educational resource for patients and health professionals on the prevention, treatment, and cure of hormone-related conditions.
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.
Rare Disease Organisations
Rare Disease UK
The national alliance for people with rare disease and all who support them.
Eurordis European Organisation for Rare Diseases
Orphanet
The European portal for information about Rare Diseases and Orphan Drugs. Includes inventories of rare diseases & Orphan drug, directory of services ( clinics, patient organisations etc), trials and research, newsletter (see below).
European Union Committee of Experts on Rare Diseases
Aids the European Commission with the preparation and implementation of Community activities in the field of rare diseases
Orphanews
Newsletter of the EUCERD and Orphanet
NORD
National Organisation for Rare Diseases USA
Government & other agencies
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.
NICE
An independent organisation responsible for providing national guidance on promoting good health and preventing and treating ill health.