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  1. About us

Useful links to other organisations

UK groups for associated autoimmune conditions and other causes of steroid-dependence

  • Achalasia Research UK
  • Alopecia UK
  • ALD Life (Adrenoleukodystrophy (ALD) and adrenomyeloneuropathy (AMN))
  • AMEND - Association for Multiple Endocrine Neoplasia Disorders)
  • Asthma UK
  • British Sjogren's Syndrome Association
  • British Thyroid Foundation
  • Coeliac UK
  • Crohn's and Colitis UK
  • Diabetes UK
  • Parathyroid UK
  • Living with CAH (Congenital adrenal hyperplasia)
  • National Rheumatoid Arthritis Society
  • Pernicious Anaemia Society
  • The Pituitary Foundation
  • The Vitiligo Society

National Professional bodies in the field of Endocrinology

  • Society for Endocrinology
  • British Association of Endocrine and Thyroid Surgeons
  • The Endocrine Society

National and international umbrella support groups

United Kingdom - ADSHG is a member of the following umbrella/sector charities

  • National Council of Voluntary Organisations (NCVO)
  • Genetic Alliance (UK)
  • National Voices (UK)
  • Rare Diseases UK

Affiliations

The Society for Endocrinology supports a number of endocrine-related charities, many of which are listed above. The ADSHG is grateful for the coordination and assistance it provides. It also maintains a public information website, You and Your Hormones, which has a range of educational materials and a specific page on Addison's and adrenal insufficiency.

European umbrella organisations

  • Endo-ERN - Endo-ERN’s mission is to reduce and ultimately abolish inequalities in care for patients with rare endocrine conditions in Europe through facilitating knowledge sharing and related healthcare and research. 
  • AdrenalNET- An initiative of the Dutch Adrenal Network that seeks to unite information about adrenal insufficiency across Europe in a central repository and improve patient care.

Overseas Addison's and Rare Diseases support groups

Many of the national support groups websites listed below are in languages other than English. Online translators can offer you a rough and ready English language version of these screen-based texts. The most readily available is Google Translate and there are others.

Africa

  • Rare Diseases Ghana
  • Rare Diseases Kenya

Australia: Australian Addison's Disease Association

Belgium: Rare Disorders Belgium (RDB)
Brazil: Brazilian Addisonian Association

Canada: Canadian Addison Society

Croatia: Rare Diseases Croatia

Czech Republic: Czech Addison's group (Addisonova Choruba)

Denmark

  • Danish Addison's Association
  • Danish Pituitary Network (Hypofyse Netvaerket)


Finland: APECED & Addison's Society (APECED.org)

France: Adrenal Association (Association Surrenales)

Germany: German Network for Pituitary & Addison's Disease (Glandula)

Iceland: Iceland Addison's Samtökin

India: Organisation for Rare Diseases India (ORDI)

Ireland

  • Addison's Ireland
  • Rare Diseases Ireland (previously GORDI)

Italy: Italian Addison's Patients Association

Netherlands

  • Dutch Adrenal & Cushings Patient Society (NVACP)
  • Dutch Pituitary Foundation (Hypofyse Stichtung)

Norway: Norwegian Addison's Society

South Africa

  • South African Addison’s Group Support (SAAGS) - contact Tessa by email: [email protected]
  • Rare Diseases South Africa

South Asia

Malyasian Rare Disorders Society

Spain: Spanish Addison's Group (Adisen)

Sweden: Swedish Addison Association

Turkey: Turkish Addison’s Association

United Arab Emirates: Emirates Rare Disease Society

United States of America

  • US National Adrenal Diseases Foundation (NADF)
  • US National Organisation for Rare Diseases (NORD)
  • US National Institute of Diabetes, Digestive and Kidney diseases information on Adrenal Insufficiency

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Published: 4th November, 2021

Updated: 29th April, 2022

Author: Vick Smith

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Research Grants

Research Grants

Our charity is at the forefront of medical research into Addison's Disease. Help us fund medical researchers working in this important field of endocrine research. Read more

Published: 22nd February, 2019

Updated: 10th November, 2021

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The information contained within this website is not intended to provide clinical diagnosis and/or personalised medical advice. It should not be treated as such. Always seek the advice of your doctor or a health care professional before starting any new treatment for your underlying condition. While we have taken every care to compile accurate information to reflect the current state of knowledge, we cannot guarantee its correctness and completeness. The information provided in this website does not constitute business, medical or other professional advice, and is subject to change. In no event will the Addison’s Disease Self-Help Group or any of the contributors be responsible or liable directly or indirectly, for damages or liabilities relating in any way to the use (or misuse) of information contained within or referred to in this website.

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