SarcoidosisUK

Jess’s Rule is a new primary care initiative to encourage GPs teams to rethink a diagnosis. You can find out more about Jess's Rule here: england.nhs.uk/long-read/je...

Jess's Rule encourages seeking second opinions and specialist referrals, often crucial for a sarcoidosis diagnosis.

You spend, brands donate to SarcoidosisUK. Help us when you shop with 7,000+ brands. Join now.

A big thank you to everyone who raises free funds for us on #easyfundraising.

If you're not signed up yet, join today and you can raise donations for us every time you shop online!

Sign up before midnight 2nd November and we could win a £1,000 donation:

join.easyfundraising.org.uk/sarcoidosisu...

Today is World Mental Health Day and we know that having a rare disease can take a huge toll on your mental health. Remember to check in with yourself today.

If you have found yourself struggling, take a look at our 'Sarcoidosis and Mental Health' page here: www.sarcoidosisuk.org/support/sarc...

We are looking for new trustees! 📣

Would you like to help set strategic direction for the charity? Could you act as a guardian of our vision and values? Do you have an interest in sarcoidosis? We would love to hear from you!

Find out more: www.sarcoidosisuk.org/join-our-boa...

We’re doing a major survey of patients and supporters to find out what do we do well, what could we do better and what else can we do to support our community. Have your say and help to shape our next steps.

Click here to 'Have Your Say' today: forms.gle/WPAS8kXBPY2s...

We’d like to give a huge shout out and thank you to Alex, along with his Dad Paul, for hosting their third annual fundraising event in memory of Julie Dawson.

We are so thankful for their continued support and for raising much needed awareness of sarcoidosis 💙

Join our London Support Group on their trip to Kew Gardens this Sunday!

This in-person support group will meet at 11am, and is open to anyone affected by sarcoidosis in London and surrounding areas.

To find out more, please email info@sarcoidosisuk.org.

We are looking for new trustees! 📣

If you would you like to help set strategic direction for the charity, act as a guardian of our vision and values and have an interest in sarcoidosis, we would love to hear from you!

Click here to find out more: www.sarcoidosisuk.org/join-our-boa...

This bank holiday weekend, why not give our sarcoidosis themed wordsearch created by Jacqui Newton a go!

Download the wordsearch here: www.sarcoidosisuk.org/wp-content/u...

We also have a large text version available if needed: www.sarcoidosisuk.org/wp-content/u...

Good Luck! 🎉

Join us for the next North West Support Group meeting taking place on Monday 18th August at 6:45pm!

This is a virtual event, taking place on Zoom, and is open to anyone in the North West.

If you would like to join, please contact info@sarcoidosisuk.org for more details!

Today, our Sarcoidosis Facebook Support Group turns 10!

A special shout out to our amazing volunteer moderators who help to keep our groups free of spam, and full of support - we couldn't do it without you!

Click here to join our Facebook community: www.facebook.com/groups/sarco...

Have you seen our Support Services Poster?

We know that sarcoidosis can be confusing and isolating, particularly for newly diagnosed patients. We hope this poster will let patients know that we're here for them.

You can order this poster here: store.sarcoidosisuk.org/product/supp...

You spend, brands donate to SarcoidosisUK. Help us when you shop with 7,000+ brands. Join now.

We've had 53 donations in the last 30 days, thanks to our supporters using #easyfundraising when they make online purchases! Thank you! It's never too late to sign up and help us if you haven't already. Plus, join today and we could win a £500 donation: join.easyfundraising.org.uk/sarcoidosisu...

Join us for the next North West Support Group meeting taking place on Monday 14th July at 6:45pm!

This is a virtual event, taking place on Zoom, and is open to anyone in the North West.

Please contact info@sarcoidosisuk.org for more details!

We will continue to provide input into the consultation process to ensure that those most disabled by sarcoidosis are not financially disadvantaged by future changes.

SarcoidosisUK welcomes the UK Government’s decision to remove changes to Personal Independence Payments from the recent welfare bill until after the Timms review.

Join us for the next London Support Group meeting taking place on Monday 7th July at 7:00pm!

This is a virtual event, taking place on Zoom, and is open to anyone in London or the surrounding areas.

Please contact info@sarcoidosisuk.org for more details!

In celebration of #SmallCharityWeek, we're taking a moment to highlight how our work is made possible through incredible support!

We truly benefit from our supportive sarcoidosis community thanks to our remarkable volunteers and supporters. Thank you for everything you do!

We have created a 'Newly Diagnosed' page to help answer some of those burning questions, such as 'what is the outlook?', 'what support is available?', and 'how can I prepare for an appointment?'.

Check out our newly diagnosed page here: sarcoidosisuk.org/information-...

Quote from Professor Ling-Pei Ho in a cloud with a beach ball in the top right and flip flops in the bottom left. The quote reads: "In prolonged heat waves in the summer, sarcoidosis patients have a higher tendency to have abnormally high calcium levels (hypercalcaemia). It is very important that they cover skin up, use high factor sunscreen, stay hydrated and avoid eating high calcium foods like oily fish, milk and cheese. They should go to see their GP if they experience aches and pains, vomiting, nausea and more severe than usual fatigue."

It's that time of year again! ☀️

As temperatures rise, many people affected by sarcoidosis are at a higher risk of health problems. Luckily there are many ways to stay cool and lessen the impact of the heat.

Click here to find out more: www.sarcoidosisuk.org/staying-cool...

You spend, brands donate to SarcoidosisUK. Help us when you shop with 7,000+ brands. Join now.

We're registered on #easyfundraising which means you can raise free donations for us when you shop online from over 8,000 retailers! Sainsbury's, Argos, Just Eat and more are ready to donate at no extra cost to you. Sign up today and we could win £500: join.easyfundraising.org.uk/sarcoidosisu...

Do you have neurosarcoidosis? 📣

Our friends in the research team at University Hospital Coventry & Warwickshire are conducting a patient survey looking at treatment related side effects in neurosarcoidosis.

Find out more: forms.office.com/e/M0P9nAKn8c

Did you get our May Newsletter? 📨

Don't miss out - catch up on our latest news! Check your inbox now or click here: www.sarcoidosisuk.org/about/newsle...

To make sure you don't miss out on any of our future updates, sign up to our mailing list 💌

#newsletter #sarcoidosis #update

Today, we're celebrating our incredible volunteers! We're grateful for them all year round, but as it's Volunteers Week we wanted to share a little bit of extra love to the incredible people who support us 💙

Email info@sarcoidosisuk.org to learn how you can get involved ✨

Blue background with a quote in a line box. The quote reads "There needs to be a strong emphasis on non-pharmacological support and symptom palliation [symptoms relief]...ultimately you have the right information at the right time and in the right place to make informed and shared decisions is really crucial to maximise your quality of life" - Professor Anne-Marie Russell

This quote was taken from our Patient Day on the 29th April. If you want to watch Professor Anne-Marie Russell's presentation on managing your sarcoidosis symptoms, with an emphasis on fatigue, please click here: www.sarcoidosisuk.org/symptoms-202...

It can be difficult to know which consultants to ask for a referral to when seeking specialist care for sarcoidosis. Our Consultant Directory is a growing database of consultants that have been recommended to us by patients and healthcare professionals: sarcoidosisuk.org/information-...

A circular graph indication 90% with a blue lung graphic in the center of it. The words underneath read 'Pulmonary sarcoidosis occurs in around 90% of sarcoidosis patients'

Techniques to understand Pulmonary Sarcoidosis: - Lung Function Tests; - X-Rays; - CT Scan; - MRI Scans; - Bronchoscopy; - VATS (Video-Assisted Thoracoscopic Surgery) in rare cases

Common symptoms of pulmonary sarcoidosis include: - fatigue and feeling ‘washed out’; - shortness of breath, especially with exercise; - dry and persistent cough; - chest pain.

In about 90% of patients, sarcoidosis affects the lungs and/or lymph glands, this is known as 'Pulmonary Sarcoidosis'

Multiple tests or scans may be needed to make a diagnosis, particularly if the symptoms aren’t obvious.

Find out more here: www.sarcoidosisuk.org/information-...

Quote reads: "Friendly and efficient service from the first contact via email to the very helpful chat with the nurse. Subsequently attended a support meeting too. Wish I’d made contact sooner as I’ve had the condition for years and until now haven’t met anyone else with it." - 2025 SarcoidosisUK Nurse Helpline Caller

Our SarcoidosisUK Nurse Helpline is an opportunity for you to talk to someone who truly understands what you are going through. This is a free support service, available to anyone in the UK.

Click here to schedule a call with one of our amazing nurses: sarcoidosisuk.org/support/nurs...

Join us for the next East Anglia Support Group meeting taking place this Saturday 17th May at 2.00pm!

This is an in person event and is open to anyone in East Anglia and the surrounding areas.

If you would like to join, please contact info@sarcoidosisuk.org for more details!

Thank you so much to everyone who attended our 2025 Sarcoidosis Patient Day and to all of our incredible speakers. It was a fantastic day, and we hope you enjoyed it as much as we did!

Click here to watch the day back on our Patient Days Hub: www.sarcoidosisuk.org/information-...