Useful links to other organisations

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 Addisons/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 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.

Australia

Australian Addison's Disease Association

Brazil

Brazilian Addisonian Association

Canada

Canadian Addison Society

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

Ireland

Addison's Ireland

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

Email; [email protected]

or write to;

36, 3rd Avenue, Newton Park. Port Elizabeth 6045.South Africa

Spain

Spanish Addison's Group (Adisen)

Sweden

Swedish Addison Association

Turkey

Turkish Addison’s Association

United States of America

US National Adrenal Diseases Foundation (NADF)

Latest

Preparing your own Emergency Kit for Addison's or Adrenal Insufficiency - 16/04/2021

Preparing an emergency kit is something every person with Addison's or Adrenal Insufficiency should do once they have a diagnosis. Kits are sometimes provided ready-made by medics and can also be purchased online. Here we help you create your own emergency kit in seven steps.
Useful links to other organisations

This section provides electronic links to the websites of other organisations in the UK and around the world that provide support and information to people with Addison's and adrenal insufficiency. As many people with Addison's also live with other autoimmune conditions too, we have included some links to relevant patient groups for these conditions.
Novel Coronavirus (COVID-19) - 16/04/2021

Our medics have been keeping an eye on pandemic developments. This page is up to date but we will continue updating it regularly as we find out more information from the government.
Becca’s positive pants 10 mile walk

To show how far I’ve come since my diagnosis nearly 3 years ago... from not being able to stand in the shower let alone walk 10 miles.

Updated NHS Steroid Card Released

Following the early release of the new NHS Steroid Emergency Card back in March to keep patients with Addison's or adrenal insufficiency safe during the COVID-19 crisis, the NHS steroid card has been updated and physical copies will be available to order from Tuesday 18th August 2020 for hospital teams!
New Video: Managing medication and COVID-19 - 29/03/2020

In our latest video, ADSHG Trustee and Professor of Endocrinology explains how to manage your medication should you get ill in the coming weeks.
Behind the News: Hydrocortisone as a Covid-19 Treatment - 09/12/2020

In recent days, UK news networks have been sharing a story about new studies hailing Hydrocortisone as a Covid-19 treatment. We asked our medics to review the research and the emerging stories so that we can give you a balanced perspective while also updating you on any impacts to the drug supplies we depend on.
ADSHG in The Guardian - Rare Diseases edition!

We are delighted that our article "Think Addison's disease - save a life", is featured in today's Guardian newspaper Rare Diseases supplement!
New UK Rare Diseases Framework launched

On 9 January 2021, the Department of Health and Social Care published the UK Rare Diseases Framework. But what does this policy mean for those with Addison’s disease, adrenal insufficiency and the rare disease community as a whole?
Receiving the COVID-19 Vaccine - Personal Stories

The COVID-19 vaccination campaign has kicked off - but what does it feel like to receive the COVID-19 vaccine? People with Addison's and adrenal insufficiency share their experiences of receiving the vaccine.
Research Update - Professor Arlt's Perspective - 17/03/2020

In 2017, Weibke Arlt, a member of our Clinical Advisory Panel, published research about Addison's and natural killer cells. In recent weeks, it's gone viral in light of the COVID-19 outbreak. We asked her to give her perspectives on what that means for us. She kindly tweeted her responses yesterday.
Easing lockdown: How are you feeling? - 10/5/2020

It's important to remember you're not alone in experiencing a range of emotions after adapting to lockdown life.
Coronavirus Vaccines and Adrenal Insufficiency

Everyone with a steroid-dependent adrenal condition should get the coronavirus vaccine to reduce their risk of getting coronavirus. This is because people who are steroid-dependent are at increased risk of needing hospital care if they get coronavirus, due to the risk of adrenal crisis.
[Superceded] EJE Guidance: Managing Adrenal Insufficiency in the time of COVID-19 - 21/04/2020

the European Journal of Endocrinology (EJE) editoral board has commissioned a new guidance series for the management of endocrine conditions during COVID-19. Included within this is clinical guidance for the management of Addison's disease and adrenal insufficiency. Here we take a look at this vital new guidance, so you can get a clearer view of what this means for you or your loved ones.

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