Access to the online platform is a key membership benefit, providing subscribing members the opportunity to share experiences, ask questions, make new friends and discuss the practicalities of living with Addison's and other types of adrenal insufficiency.
Why use the forum, our online community platform?
One of the best ways to gain new knowledge and information about Addison’s and adrenal insufficiency is through the experiences of other people with the condition.
Even though you may feel alone, our forum brings together hundreds of people who have faced similiar challenges to yourself and can exchange knowledge and support through shared experience.
Even if you feel that you don't need advice, you may be in a position to offer it and to help others by joining our community.
We also post the ADSHG digital magazine and newsletters to the forum, for members to access.
Already a member: log on and find your people
You need to be over 16 to use the forum independently.
If you are younger than this, we ask that your parents join the ADSHG and use the forum on your behalf.
Take a look at our Young People (11+) page for information specifically aimed at young people, and if you have outstanding questions, do reach out to us.
Young People page
Contact Us
The forum is a platform provided by the company Invision Community
You can read more about the measures they take to keep the data shared by users of their platform (including our online community members) safe:
Privacy & PII data features
We ensure that we keep the forum updated with recommended updates from Invision Community, that include security updates.
Data storage
Invision Community store their data across 2 data centres in the United States.
Hosting for Invision Community
It is very important that you only share information that you are comfortable with other members of the ADSHG online community knowing. We have some guidance below to help protect your privacy.
Protect your Privacy, and that of other users
- Do not use your real name in your profile 'user name'.
- Revealing anyone else’s personal information.
- Copying or circulating forum postings outside the forum, in any format, without the posting members express prior written permission. What is said on the forum stays on the forum.
- Sharing your log in details with anyone else, or posting on behalf of non-members. If you are asked by anyone to post on their behalf please decline and contact us for support at enquiries@addisons.org.uk.
- Using multiple forum accounts or throwaway email addresses or accounts that impersonate another person. If you suspect a user is posing as someone else, please contact the moderators. We reserve the right to verify a member’s identity if necessary.
The ADSHG does not allow researchers, journalists, pharma company representatives or clinicians to register on the forum. Visit our media centre or research application page for further information and advice.
The ADSHG is proud of the high-quality information it provides around Addison's Disease and other types of adrenal insufficiency. It is very important to us that we avoid spreading any misinformation or inaccuracies.
Please bear in mind the following points:
- Forum users are not medics. Some people may write convincingly and even appear to be qualified. Be wary of “medical advice” in posts or messages and always consult your own qualified healthcare professionals.
The following types of posts break forum rules:
- Decrying,or advising anyone to ignore a medical professional’s expert advice
- Sharing false or misleading information about any matter that may lead to harm or fear. The forum is not for conspiracy theories or misinformation; these will be removed.
- Asserting that your experience will apply to everyone with AD can be dangerous. New patients in particular may not, for example, realise that advice for Primary Addison’s is not always the same for those with Secondary or Tertiary adrenal insufficiency.
- Diagnosing, or giving the impression that you are medically qualified. Stick to personal stories and experiences and be clear that you are not qualified to give individual clinical guidance.
- Encouraging changes to medication, regime, or health interventions on the basis of articles or research that has yet to be peer-reviewed, ratified by governing bodies or reviewed by ADSHG medics. Please do share interesting news but we ask you not to advocate change without professional advice.
- Naming individual healthcare professionals, hospitals or medical practices when being critical. We understand that our members receive varied input from healthcare services and we understand that by sharing your experiences, others can learn and support each other. However, please use non-identifying terms like ‘my consultant’ or ‘my nurse when you share your experience. It can be helpful to note how it might have been better, without getting personal. We should all be aware that we do not always have full context or all the details on the forum.
Keeping everyone safe on the forum
If we think someone on the forum might not be safe, we will take action. Please privately report anything you see that makes you think someone might not be safe.
We do not tolerate abuse of any kind on the forum and, if we are concerned about someone's wellbeing, we will act quickly.
We will listen to the views of anyone who is at risk in deciding what to do, following our Safeguarding Policy at all times. You can report any concerns to safeguarding@addisons.org.uk, and our Designated Safeguarding Officer will be alerted.
The following types of posts break forum rules:
- Personal attacks - Posts that insult, belittle, discredit or are rude to other members, moderators, volunteers, staff, medics or indeed anyone else. It's not helpful and it doesn't make the forum a friendly place.
- Swearing - Offensive language (including disguised words) or attempts to avoid filters.
- Commenting on someone's appearance or other features - Please keep the forum for discussing life with AD. Even well-intended compliments can be misconstrued or seen as patronising and may be removed.
- Racism, sexism and other discrimination - Being unfair or unkind to someone because of their origins, ability, gender, mental health or other factors (it's usually illegal).
- Content not suitable for family viewing in posts and personal messages will be removed. Please report any such posts and we will act immediately.
- Politics and radicalism – This forum is for chats about life with AD and not political opinions and debates.
- Inappropriate profile pictures–Photos that are deemed inappropriate by a moderator will be removed.
- Use by children - You must be 16 or over to use the forum (parents of an AD patient may join of course). You can visit Rare Youth Revolution for young people with rare conditions.
If anything on the forum feels unpleasant or unsafe to you, please report it to us, and we will act.
Please visit Mind's Urgent Help Page if you feel unsafe or need support with your mental health.
Things that make our community platform (forum) a better place to be:
- Writing in a friendly style, as you would talk face-to-face. Letting off steam can be understandable, but be careful about how it might make others feel. Post carefully and listen and show support for others.
- Sharing your own stories is a good way to show that you understand. Being honest about the reasons you are sharing a story helps others get to know and trust you.
- Helping others find the conversations they want to join by posting your topic in the appropriate area. If it is already being talked about somewhere on the forum, post there rather than starting a new thread.
- Waiting a while before replying to something that makes you angry. If you feel strongly about a comment, please think through your response before posting. Always consider how someone else may read or interpret your post. If you think someone is being aggressive or contentious, please use the report button to let the moderators know and then ignore the post.
- Avoiding posting copyrighted material. Please do not post any material onto the forum that you don't have the rights to. Providing a link or other helpful directions to the content is much safer.
Things that make the forum less supportive and break forum rules:
- Cross posting - copying a post across different threads or forum sections to push it back to the top of the 'most recent posts' list.
- Bumping - adding to a thread just to push it back to the top of the 'most recent posts' list.
- Spamming - promotions and links that add nothing of value.
- Shouting - over-using CAPITALS and exclamation marks (!) is very annoying in posts and post titles. Please use bold, italics or underline to stress words in your posts instead.
When you join the ADSHG, an account is created for you on our online forum, and you will be sent details on how to log in.
If you have any problems logging in, please email our membership support.
Email membership support
Our ADSHG Members’ Forum is managed by a group of volunteers, called the Forum Buddies, who are supported by the Operations team at the ADSHG.
As well as offering their extensive experience and support to forum members through their own posts and comments, they have a key task in ensuring that forum rules are followed, to keep our Forum as a pleasant space.
The moderating team are not able to edit the content of forum postings on the website, so ask for input from the ADSHG team if this is required.
Please be aware that if the ADSHG team consider that your post has broken the forum rules, it may be hidden. Moderation is usually completed confidentially through a private message with the relevant forum users.
Formal warnings
Where possible, we will let you know that your message is unacceptable and why.
If you have been formally warned in this way more than twice, on the third occasion, your access to the forum may be removed. We may also, if appropriate post advice about the matter on the thread concerned.
We are committed to providing a high quality, accessible and responsive service to our members and the public.
However, if you believe that things have gone wrong, or you are unhappy with our moderation actions then, rather than posting complaints on the discussion forums, we ask you to please see the Complaints section on our Contact Us page
Contact Us
Our team will inform those involved and, where needed, communicate more widely.
We have a small team and we ask for your respect and patience while we investigate and address any rule-breaking. The ADSHG team’s interpretation of the forum rules is final.
To protect the privacy of our forum members, we will only discuss moderation matters internally or with the individual(s) concerned and will not provide details to other forum members.
We will try to respond to any complaint within five working days.
Not yet a member but want to access the online community?
You’ll need to be a member of the ADSHG to read previous conversations, ask questions or answer other people's questions within the Forum.
By joining as a charity member, you get access to a range of additional resources and support for managing your condition. You'll be joining a vibrant, supportive, engaged community of people affected by Addison's and adrenal insufficiency.
Your membership helps to give our charity a stronger voice, fund vital research, enable the production of our free publications and our work to promote better medical understanding, working in cooperation with leading adrenal specialists. We couldn't do this without the fantastic support of the Addison's and adrenal insufficiency community.
Together, we're stronger!
- Being part of a community that supports each other, shares knowledge, and comes together to improve the quality of life for people with Addison’s and adrenal insufficiency.
- Welcome pack in the post: key leaflets and publications to help educate you about Addison’s and adrenal insufficiency, and the charity.
- Member magazine (x2/yr) and Keeping You Posted newsletters
- Regular member only e-news
- Member-only online community platform for support and advice
- Member-only regional socials (run by volunteers)
- Early bird access to our charity events
- A vote at our AGM to help set our direction as an organisation
- Discounts on events and some shop items
Become a member today!
