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Addison's Disease UK

@addisonsdiseaseuk

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The UK charity for all affected by Addison’s disease & adrenal insufficiency.
🗓 29 May: #AddisonsDiseaseDay
📣 Raise awareness
🎉 #TeamAddisons

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🚨 People with adrenal insufficiency deserve safer adrenal crisis care.

An adrenal crisis is a life-threatening emergency that needs a time-critical injection of hydrocortisone. Other life-threatening conditions have auto-injectors or pre-filled syringes. Adrenal crisis doesn’t.

💉 Instead people face a complex process of 12+ steps to prepare an injection, often while in pain, vomiting and struggling with brain fog.

Tragically, 1 in 200 adrenal crises are fatal. Patients' lives are at risk, and hospital admissions are increased because of delayed treatment.

🏛️ We’re campaigning for Safer Adrenal Crisis Care and calling on governments across the UK to act. Join us by writing to your MP and asking them to attend our Parliamentary drop-in on 25 November. Use our letter templates on our website - we need you to let them know why this matters.

Swipe to learn more. Share this post. Write to your MP. Together we can help make adrenal crisis care safer.

📣 Get involved. Link in our bio 🔗 by @addisonsdiseaseuk

Exciting news! We're delighted to announce that U-RHYTHM, a portable hormone collection device, has been awarded £20,000 in funding from the @addisonsdiseaseuk (ADSHG) 🎉

Congratulations to Dynamic Therapeutics, the team behind U-RHYTHM, whose mission is to provide accurate, well-validated technology for measuring hormone rhythms - improving the lives of patients worldwide.

In our news article, we catch up with the inventor of U-RHYTHM, Professor Stafford Lightman, who tells us more about the device, why it's important for the adrenal insufficiency community, and much more.

💬 "I think it is important to emphasise that every patient is different, including in their ability to absorb and break down their cortisol replacement therapy. There is no one replacement regime that fits all patients, and in an age of personalised medicine each patient deserves to know how their body deals with their replacement therapy."

Tap the link in our Stories to read the full update 🔗

Want to hear more about U-RHYTHM? We're looking forward to welcoming Dr Susana Paul-Stols from Dynamic Therapeutics to our Manchester Get-Together in September. Book your tickets via the link in our Stories 🎟️ by @addisonsdiseaseuk

Come along and watch the highlights from our Members’ Get-Together in Birmingham!

The day included expert medical speakers, breakout sessions discussing the topics affecting you, emergency injection training, expert Q&A and of course plenty of opportunity for you to meet and connect with others.

✨ Thank you to everyone who joined us and made it so special, from our Trustees such as @katie_harriss, volunteers and of course you our community!

We can’t wait to share more from the event with you. A full round-up of the expert, trusted information shared is coming soon to our members’ forum. Join our charity so you don’t miss out on these fantastic resources (link in bio) 🔗 www.addisonsdisease.org.uk/join-us

📍 Next stop: Newcastle! Whether you’ve been with us for years or are newly diagnosed, all are welcome and can learn something new. Find out more and RSVP (link in stories) 👉 www.addisonsdisease.org.uk/Event/member-get-together-9-aug-newcastle

🎥 Captured by our fantastic volunteer @arms_films by @addisonsdiseaseuk

💬 "I want to help my friend get the best, quickest and safest care. All Addison's sufferers and their families and friends deserve the same."

A huge thank you to Ben, Lucy, Dave, Joanna, Shona, Claire and Alison for showing your support for our Safer Adrenal Crisis Care campaign!

Every photo puts a face to our campaign, helping governments across the UK see the people affected by adrenal crisis and understand why safer care matters. Together, we're showing the strength of our community and the need for change.

Now it's your turn! We want YOU to join them.

1️⃣ Write to your MP using our letter templates. Ask them to support our campaign and attend our parliamentary drop-in.

2️⃣ Print your pledge poster at home, or show on your mobile phone, in colour or black and white.

3️⃣ Take a photo holding your pledge poster and submit it through our form. Ask your friends and family to do the same!

4️⃣ Share it on social media to help raise awareness and inspire others to take part! Don't forget to tag us at the Addison’s Disease Self-Help Group!

Let's show the strength of our community and make our voices heard.

✏️ Write to your MP. 📸 Show your pledge. 👉 Submit your photo. 🚨 Help make change happen!

➡️ Take part in #SaferAdrenalCrisisCare 🔗 link in bio. by @addisonsdiseaseuk

This #FundraiserFriday, we’re shining a spotlight on Thom, who took on the Chester Marathon in support of our charity and raised over £1,000! 👏

Living with adrenal insufficiency himself, Thom has truly valued the support he’s received from our charity and wanted to give something back.

💬 Thom shared: "The charity has been a source of support throughout my own journey, so being able to give something back made every mile of the Chester Marathon that little bit more meaningful."

👉 To donate to Thom's fundraiser, please visit (link in our stories) 🔗 www.justgiving.com/page/thom-crowe

We’d like to say a huge thank you to Thom for his fantastic fundraising effort! Your support means so much to us 💜 by @addisonsdiseaseuk

Hello from the @royalcollegeofgps Conference and Exhibition! 👋

For the next two days, we’re sharing our new GP education campaign, ‘Spot. Stabilise. Support.’ with GPs from across the country. Adrenal insufficiency is easy to miss and dangerous when mismanaged. Our campaign helps GPs act early and confidently.

🆕 Visit our stand to pick up your FREE GP practice resource folder on how to optimally manage adrenal insufficiency. Each folder includes resources to support your clinical practice and your patients.

📍 Find us at stand D70, back left-hand corner of hall four, to collect your free GP resource folder!

Attending #RCGPAC2026? Come and meet our team, Cathy, Dom, Martin and Chloe, who also bring lived experience. Ask us anything about Addison’s disease, adrenal insufficiency, and steroid dependency.

Thank you to Westfield Health for their kind contribution towards the cost of our stand. We’re incredibly grateful for your support and for helping make this opportunity possible! by @addisonsdiseaseuk

Behind our Safer Adrenal Crisis Care campaign are real people, real experiences and real lives at stake.

Meet Suzanne Gielgud of @gielgudfilms, who shares her family’s experience and personal motivation for supporting our campaign.

🎥 This is the first in a series of short videos she’s directed and filmed. Throughout the series, Suzanne will speak to people affected by all types of adrenal insufficiency, and to expert clinicians, highlighting the patient safety risks in adrenal crisis care.

Look out for new videos building up to our Parliamentary drop-in on 25 November.

Want to know more? Our #SaferAdrenalCrisisCare campaign calls for:
💉 Simpler emergency treatment: easier-to-use injection options and future innovations such as pre-filled syringes and auto-injectors.
🚨 Stronger emergency response: better awareness, training, patient record alerts and consistent treatment.

Watch. Share. Campaign for #SaferAdrenalCrisisCare with us ➡️ link in bio and stories 🔗
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Film: @gielgudfilms
Animation: @scarlett_gielgud
Soundtrack: @ianlivingstonemusic
Production assistant: @chris_armstrong
Venue: @radissonredliverpool by @addisonsdiseaseuk

🚨Show your support for safer adrenal crisis care!

Have you written to your MP to call for safer adrenal crisis care? Thank you! Now let’s show the faces behind our campaign.

Once you’ve sent your letter, take a photo holding our “I’m campaigning for Safer Adrenal Crisis Care” pledge poster and help us spread the word!

Here’s how to get involved:

1️⃣ Write to your MP using our letter templates. Ask them to support our campaign and attend our parliamentary drop-in.

2️⃣ Print your pledge poster at home in colour or black and white.

3️⃣ Take a photo holding your pledge poster and submit it through our form. Ask your friends and family to do the same!

4️⃣ Share it on social media to help raise awareness and inspire others to take part! Don't forget to tag us at @addisonsdiseaseuk!

As well as showing your support and encouraging others to write to their MPs, your photo will help us build a photo gallery showcasing the people behind our campaign. We want governments across the UK to see the people whose lives are affected and to hear their stories about why safer adrenal crisis care matters. Your voices are key to driving change.

✏️ Write to your MP. 📸 Share your pledge. 👉 Submit your photo. 🚨Make change happen.

➡️ Take part in #SaferAdrenalCrisisCare 🔗 link in bio. by @addisonsdiseaseuk

💜 Connect with other charity members in Shoreham-by-Sea!

Join our wonderful volunteer, Wendy, for a friendly and welcoming local meet-up! It’s a lovely opportunity to meet others who understand life with adrenal insufficiency, including Addison’s disease, share experiences, swap stories and enjoy a little laughter and support along the way.

📅 Saturday 7 November | 11am-1pm
📍 Shoreham-by-Sea
👥 Open to ADSHG members only

✉️ Book your place here (link in stories) 🔗 https://www.addisonsdisease.org.uk/shoreham-by-sea-7-nov

A big thank you to Wendy for hosting and helping bring our wonderful community together! by @addisonsdiseaseuk

⏰ Don’t forget to change your clocks!

Tonight in the UK and Ireland, the clocks go back an hour and Greenwich Mean Time (GMT) begins! For most this means an extra hour in bed and brighter mornings, but what does it mean for those of us on time-critical medication?

Here are some reminders for those living with Addison's disease and other types of adrenal insufficiency.

🌙 Change your clocks before you go to bed so that when you wake up to take your morning medication, it'll match the new time of day.
💊 On Sunday morning, make sure the clocks around your house are correct so that you don't get caught out and avoid taking future doses at the wrong time.
🔔 Check that any alarms you have set to remember your doses are still accurate.
🕒 If you're on hydrocortisone infusion pump therapy, remember to change the time on your pump as well.

Looking for more support and information? Join our charity by clicking the link in our bio and help make our voice stronger 🔗 by @addisonsdiseaseuk

Charity members, you’ve got mail 📩 Our ‘Keeping You Posted’ Autumn newsletter is here!

Check your inbox for all this and more:
🚑 How our adrenal crisis training helped on a 999 call
🤝 Manchester Member Get-Together and U-RHYTHM round-up
👨‍👩‍👧 Our work with young people and families
🏛️ Safer Adrenal Crisis Care campaign update: next steps before our Parliamentary drop-in
📋 New Sick Day Rules leaflet
🔎 “Spot. Stabilise. Support.” for GPs
🌐 Our new website, launching at the end of October
👏 Fundraising highlights, including Cameron and Jude's story

If you're not a member but would like to receive future newsletters and be part of our incredible community, join us! Link in bio 🔗

We hope you enjoy this edition - grab a cuppa and have a read! We’re so proud of our amazing community and everything we achieve together. Thank you for being part of the ADSHG! by @addisonsdiseaseuk

This #FundraiserFriday, we’re saying a huge thank you to Jack, who took on the Sheffield 10K in support of our charity! 🏃‍♂️

Jack went from not running at all to training hard to take on the 10K, all to raise funds for our charity and support his auntie, Emma, who lives with Addison’s disease. What an incredible achievement! 👏

💬 Jack shared why he took on the challenge: “All of this was for one person. My auntie Emma. She lives and thrives through life living with Addison's, and she’s always a beacon of light to me."

👉 To donate to Jack's fundraiser, please visit (link in stories)🔗 www.justgiving.com/page/jackaddenbrooke

Thank you, Jack, for taking on this amazing challenge in support of Emma and helping raise vital funds and awareness. We’re so grateful for your support! 🎉 by @addisonsdiseaseuk