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UK based groups
Other useful UK sites
A UK charity dedicated to increasing funding and awareness of pre-eclampsia.
The Addison's Disease Self Help Group is the UK support group for men, women and children suffering from Addison's disease (or adrenal deficiency) and for their families.
The Adrenal Hyperplasia Network UK has been set up to provide support for all ages with Congenital Adrenal Hyperplasia (CAH), particularly adults and teenagers.
ALD LIFE aims to help all affected by or interested in adrenoleukodystrophy and adrenomyeloneuropathy, whether personally or medically.
The American Association for Klinefelter Syndrome Information and Support (AAKSIS) is a national volunteer association with the mission of education, support, research, and understanding of 47 XXY and its variants, collectively known as Klinefelter syndrome.
The American Diabetes Association is the US's main non-profit organisation providing diabetes research information and advocacy. The mission of the Association is to prevent and cure diabetes and to improve the lives of all people affected by diabetes.
This is a group providing information and support to young people and adults with complete and partial Androgen Insensitivity Syndrome, and to parents of AIS youngsters. They also support those affeceted by Swyer's syndrome (XY gonadal dysgenesis), 5 alpha-reductase deficiency, Mayer-Rokitansky-Kuster-Hauser (MRKH) syndrome, Mullerain dysgenesis, Mullerian duct aplasia, vaginal atresia, and other related conditions.
The Anorchidism Support Group was formed to serve and support any person, or the families of boys, with congenital or acquired absence of the testes. We also provide assistance to the families of children with undescended testes. We provide a means of networking with affected families, as well as education and information.
AMEND is a patient group committed to supporting all those affected by multiple endocrine neoplasia (MEN) and its associated endocrine growths.
beat is the leading UK charity for people with eating disorders and their families.
Breast Cancer Care provide information and support to sufferers of breast cancer and their families and friends.
The British Thyroid Foundation is a patient-led charitable organisation dedicated to helping those with thyroid disorders. They work with the medical profession, supporting patients and helping to raise funds for research into all types of thyroid disease.
Butterfly Thyroid Cancer Trust is the first registered charity in the UK dedicated solely to the support of patients with thyroid cancer.
CancerHelp UK is a free information service about cancer and cancer care for people with cancer and their families. We believe that information about cancer should be freely available to all and written in a way that people can easily understand. CancerHelp UK is run by Cancer Research.
The Care Quality Commission is the new health and social care regulator for England. We look at the joined up picture of health and social care. Our aim is to ensure better care for everyone in hospital, in a care home and at home.
The Caring for Carcinoid Foundation (CFCF) is the leading nonprofit organisation, dedicated to discovering a cure for carcinoid cancer. CFCF funds research into carcinoid and neuroendocrine tumors and provides support to patients and their family and friends.
Changing Faces is a national charity that supports and represents people who have disfigurements of the face or body from any cause. Changing Faces aim to enable people who have disfigurements to develop high self-esteem and self-confidence, have access to the very best health and social services and enjoy equal rights and opportunities throughout their lives.
The Child Growth Foundation is the UK's leading charity relating to children's growth. They aim to support and encourage all persons (adult or child) who have growth disorders and their families. They also promote and fund research into the causes and cure of growth disorders in children and work to educate the public in general and workers in the medical profession in particular, in the problems and difficulties encountered by those with growth disorders.
CLIMB (Children Living with Inherited Metabolic Disease) are committed to fighting metabolic disease through research, awareness and support. We are the UK’s only dedicated organisation to provide information and support on all metabolic diseases to children, adults, families, carers and professionals.
The Congenital Adrenal Hyperplasia Support Group offer information and support for parents, families and carers of people with CAH as well as for CAH sufferers themselves.
The main goal of the Diabetes Insipidus Foundation, Inc. is improved treatment, and ultimately the prevention and cure of all forms of diabetes insipidus through research. We will promote a greater public awareness and understanding of the disease and will serve patients and their families with informational material and through the quarterly publication of our newsletter.
The Diabetes Research & Wellness Foundation (DRWF) was established to assist in the relief of persons with diabetes and to raise awareness about diabetes and its associated complications. DRWFs main objective is ’staying well until a cure is found’ and in furtherance of this aim, provides support to those with diabetes by way of a Diabetes Wellness Network.
Diabetes UK is the largest charity in the UK devoted to the treatment and care of people with diabetes - to improve the quality of life for people with the condition.
DISCERN is an online version of the DISCERN instrument and handbook, written from the perspective of a health consumer (or patient) for anyone interested in information about treatment choices.
dsdfamilies is an on-line information and support resource for parents of DSD (disorder of sex development) children and for DSD teens and young adults. The website provides a service: it brings together user-friendly information on the medical management and decision-making in DSD, with psychological support, and sensitive and practical peer support.
The Endometriosis SHE Trust offer help, information and support to women with endometriosis and everyone else interested in this condition.
Endometriosis UK is the leading UK charity that supports women living with endometriosis. We provide information and support, and work to increase understanding through campaigning and awareness.
This website was set up by the FIPA Patient charity group organised by Prof. Márta Korbonits’s clinical laboratory in collaboration with the International FIPA Consortium to meet the need for information and also support FIPA patients.
Genetic Alliance UK is a national alliance of organisations with a membership of over 130 charities that support children, families and individuals affected by genetic disorders. Its primary goal is to promote awareness and understanding of genetic disorders so that high quality services for people affected by genetic conditions are developed and made available to all who need them.
Help, support and information for those affected by Haemochromatosis (Iron Overload Disorder).
Hypoparathyroidism UK is run for people with HPTH by people with HPTH, with help and advice from interested professionals. They aim to support and empower their members and to provide advice and information. They hope to raise awareness and understanding about hypoparathyroidism and to campaign for a better level of care for people living with this condition.
Infertility Network UK is the national charity offering practical and emotional support to all those suffering from infertility. They provide a wide range of services including professional advice,interactive website, quarterly magazine, and access to up to date accurate information and fact sheets on a wide range of infertility related issues.
The International Diabetes Federation (IDF) is a worldwide alliance of over 200 diabetes associations in more than 160 countries. The Federation is committed to raising global awareness of diabetes, promoting appropriate diabetes care and prevention, and encouraging activities towards finding a cure for the different types of diabetes. It is the mission of IDF to promote diabetes care, prevention and a cure worldwide. Their site includes links to national diabetes support groups around the world.
The International Osteoporosis Foundation (IOF) is a registered not-for-profit, non-governmental foundation, which functions as a global alliance of patient, medical and research societies, scientists, health care professionals, and international companies concerned about bone health. Their site includes links to national osteoporosis support groups around the world.
The International Prader-Willi Organisation are 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.
The mission of IPOFA is to provide community, support and information to women with Premature Ovarian Failure (POF) and their loved ones, to increase public awareness and understanding of POF, and to work with health care professionals to better understand this condition.
JDRF funds research into the causes, prevention, treatment and cure of type 1 diabetes and its serious and debilitating complications. We also recognise the challenge of living with type 1 diabetes. We provide information about the progress of research to individuals and families living with type 1 diabetes, through publications and public meetings. Our regional staff and volunteers help schools and businesses understand diabetes and work with children and adults with type 1 diabetes.
This web site has been set up to provide information for patients with Kallmann syndrome and their family and friends in additional to any health care professionals keen to learn more about this rare condition.
A support organisation for people with Klinefelter syndrome and their families. The website offers information on the condition and membership of the organisation.
The KSA has been supporting people in the UK with Klinefelter's Syndrome, and their families and friends, since 1990. The KSA is both a source of information and a self-help support group.
Macmillan Cancer Support improves the lives of people affected by cancer. We provide practical, medical, emotional and financial support and campaign for better cancer care.
The Men’s Health Forum’s mission is to provide an independent and authoritative voice for male health and to tackle the issues affecting the health and well-being of boys and men.
The National Association for Premenstrual Syndrome(NAPS), aims to help all sufferers of PMS by providing extensive information and support so that their PMS can be successfully managed. It works with Health Professionals both to promote research and to help ensure that sufferers can access treatment appropriate to their needs.
The National Gamete Donation Trust provides clear and practical information mainly for those considering becoming an egg or sperm donor but also for health professionals and those requiring treatment with donor eggs or sperm.
The National Institute for Health and Clinical Excellence (NICE) is the independent organisation responsible for providing national guidance on the promotion of good health and the prevention and treatment of ill health. They provide guidance on treatment on public health, health technologies and clinical practice. This link takes you to the endocrine, nutritional and metabolic section
The National Osteoporosis Foundation (NOF) is USA’s leading voluntary health organization solely dedicated to osteoporosis and bone health. NOF is committed to achieving our mission through programs of awareness, education and training, advocacy and research.
The National Osteoporosis Society is the only national charity dedicated to improving the prevention, diagnosis, and treatment of this fragile bone disease. We offer information and support to sufferers of osteoporosis as well as campaigning for better treatment and raising money to fund research into this disease.
The Neuroendocrine Tumour Patient Foundation provides patients and their families with information and support.
The Newlife Foundation help babies, children and families affected by inborn conditions. Through research, support and action we fight to improve the lives of those affected, and to reduce the chances of our children and our children’s children being affected.
NHS Choices is a comprehensive information service that helps to put you in control of your healthcare. The service is intended to help you make choices about your health, from lifestyle decisions about things like smoking, drinking and exercise, through to the practical aspects of finding and using NHS services in England when you need them.
NHS Direct aim to provide information and advice about health, illness and health services, to enable patients to make decisions about their healthcare and that of their families. They run a 24 hour helpline providing nurse advice and help information.
The Patient Advice and Liaison Service is run by the NHS and provides information, advice and support to patients, their families and carers.
The North American Menopause Society is the leading nonprofit scientific organization in North America devoted to promoting women's health and quality of life through an understanding of menopause.
Ovacome are a UK-wide support network providing information and support for everyone affected by ovarian cancer. This site is designed for women with ovarian cancer, their families, friends and carers, and health professionals.
Ovarian Cancer Action is committed to improving survival for women with ovarian cancer through funding research, raising awareness and giving a voice to sufferers.
This charity aims to offer support and information to Paget’s sufferers, to sponsor research into the causes and treatment of the disease and to raise awareness of the disease among medical professionals and the public.
The aim of this website is to provide non-medical people in the UK with good quality information about health and disease. They also review health and illness related websites and link to many of these from the web directory included on this website.
The Alliance website is a resource that helps both patients and physicians cut through the maze of information related to neuroendocrine diseases so they can make informed decisions for the treatment of pheochromocytoma and paraganglioma.
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. We also work to increase public awareness and act as a 'Patient Voice' in order to improve services and policies to meet the needs of the pituitary population.
The PNA is an international non-profit organization for patients with pituitary tumors and disorders, their families, loved ones, and the physicians and health care providers who treat them.
The Pituitary Society is dedicated to furthering the understanding of diseases of the pituitary gland. Its members are scientists and doctors whose major interest is in pituitary diseases. This public information facility is intended to provide general, authoritative information on the pituitary gland and its diseases.
The Prader-Willi Syndrome Association is only UK organisation that is dedicated to supporting people with Prader-Willi syndrome (PWS), their families, carers, and the professionals who work with them.
The Pre-Eclampsia Society (PETS) is a support and information organisation for women, run by women, who themselves have had the disease.
Prostate Action funds medical research into prostate diseases and the training of healthcare professionals, provides free information on all prostate diseases and campaigns to raise public awareness of these diseases.
The core objectives of the Prostate Cancer Charity are to provide support and information to sufferers and their families and to fund research into treatment for prostate cancer.
The Restricted Growth Association is a UK based charity that provides information and support to improve the quality of life for persons of restricted growth, and their families. We always welcome new members to our membership - whether you are a mother or father with a child of restricted growth, or you are a person of restricted growth yourself.
The Sexual Advice Association is a charitable organisation, to help improve the sexual health and wellbeing of men and women and to raise awareness of the extent to which sexual conditions affect the general population.
Surrogacy UK is an organisation created by experienced surrogate mothers. They wanted to form an organisation that reflected their experience of what makes surrogacy work: the things needed to make every surrogacy journey as wonderful as it can be.
Tall Persons Club GB & Ireland is an independent non-profit organisation dedicated to providing information and promoting the interests of tall people.
A site from the US aiming to provide information about diabetes for patients and their families, and offer useful advice about the prevention and management of diabetic complications, to provide resources for patients, families, diabetes educators and other health care professionals, and to support people with diabetes in their pursuit of quality of life.
The Gender Trust is a listening ear, a caring support and an information centre for anyone with any question or problem concerning their gender identity, or whose loved one is struggling with gender identity issues. The Trust is also recognised as an authoritative centre for professional people who encounter gender identity related issues in the course of their work.
Major Aspects of Growth In Children (MAGIC) provide support services for the families of children afflicted with a wide variety of chronic and/or critical disorders, syndromes and diseases that affect a child’s growth.
The ME Association provide information, support and practical advice for people who are affected by ME/CFS/PVFS, their families and carers.
The Patient’s Association is a charitable organisation providing patients with an opportunity to raise concerns and share experiences of healthcare. Through our helpline, correspondence and research we learn from patients the issues that are of concern and work towards improving the healthcare we all receive.
ThyCa is a not-for-profit volunteer association of patients and healthcare professionals. This website has been created and is maintained by thyroid cancer survivors. Our mission is to educate, so we and our families better understand the disease; to participate, so others learn from our experience; to communicate, so we and our health care professionals better understand each others' needs; to support research, for a future free of thyroid cancer.
The Thyroid Cancer Alliance is an international network of thyroid cancer patient support organisations working together to provide support and information to those affected by the disease throughout the world.
The Thyroid Eye Disease Charitable Trust (TEDct) aims to provide information, care and support to those affected by thyroid eye disease.
An international alliance of thyroid groups. The website provides links to national thyroid support groups around the world.
The Turner Syndrome Society of the US creates awareness, promotes research, and provides support for all persons touched by Turner Syndrome.
The Turner Syndrome Support Society is a national charity caring for the needs of those with Turner Syndrome throughout the UK. The Society offers support and information to girls and adult women with Turner Syndrome, their families and friends. The Society enjoys a good relationship with relevant specialists to promote a good basis for education and understanding of the management of Turner Syndrome.
Unique is a support group for sufferers with rare chromosomal disorders and their families and friends. We provide a source of information and support to families and individuals affected by any rare chromosome disorder and to the professionals who work with them. Unique is a UK-based charity but welcomes members worldwide.
Verity is the UK charity for women whose lives are affected by polycystic ovary syndrome (PCOS). They provide support and information for sufferers and their families. Verity also run a subsidiary company called PCOS UK that aims to educate healthcare professionals about PCOS.
The Vitiligo Society is the only organisation that offers support and understanding to people with vitiligo and their families in the UK and the Republic of Ireland. We also support people anywhere in the world who approach us and ask for our help. The Society promotes and funds research projects aimed at establishing the causes of vitiligo and finding safe and effective treatments for vitiligo.
Weight Concern is a registered charity, set up in 1997 to tackle the rising problem of obesity in the UK. The charity is committed to developing and researching new treatments for obesity. The charity also works to help people improve their health and feel good about themselves, whatever their weight.
Women's Health Concern is a charitable organisation that aims to help educate and support women with their healthcare by providing unbiased, accurate information.
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.
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