SarcoidosisUK @sarcoidosisuk.bsky.social · 18/03/2026We need your help this Sarcoidosis Awareness Month 📣 Every pound we receive in April will go directly into our research fund. Run, bake, game, dance, or challenge yourself this April for a brighter sarcoidosis future 🌟 Click here for inspiration: sarcoidosisuk.org/wp-content/u... 001
SarcoidosisUK @sarcoidosisuk.bsky.social · 05/03/2026Our 2026 Research Innovation Award is open for applications! Find out more here: sarcoidosisuk.org/research/inn... We need your help to go further and continue funding innovative sarcoidosis research. Please consider making a donation today: sarcoidosisuk.org/donate/donat... 000
SarcoidosisUK @sarcoidosisuk.bsky.social · 26/02/2026Sign up to @easyuk and when you shop online with your favourite retailers, they’ll donate to us. It’s free and your shopping won’t cost you any extra – the retailers you shop with will donate, not you! join.easyfundraising.org.uk/sarcoidosisu...join.easyfundraising.org.uk 000
SarcoidosisUK @sarcoidosisuk.bsky.social · 23/02/2026Today is National Helplines Awareness Day and we want to take this opportunity to say thank you to our incredible nurses✨ They have made over 4,500 calls and provided empathetic sarcoidosis support to patients, their family and friends, and more. Thank you! 110
SarcoidosisUK @sarcoidosisuk.bsky.social · 18/02/2026We are thrilled to receive funding from the #NationalLottery Community Fund thanks to #NationalLottery players! Thank you! Our Support Groups are a place for anyone affected by sarcoidosis to get empathetic support. Find out more: www.sarcoidosisuk.org/support/supp... 010
SarcoidosisUK @sarcoidosisuk.bsky.social · 29/01/2026For many people with sarcoidosis, it's an 'invisible' illness. It can be hard to explain why you may have to cancel plans last minute or are too exhausted to leave bed. This can leave you feeling lonely or isolated. Explore the support we have available: www.sarcoidosisuk.org/support/your... 020
SarcoidosisUK @sarcoidosisuk.bsky.social · 16/01/2026Did you see we have 14 new sarcoidosis factsheets? These are a fantastic resource to help educate anyone affected by sarcoidosis and to share with family and friends: sarcoidosisuk.org/information-... 000
SarcoidosisUK @sarcoidosisuk.bsky.social · 08/01/2026Fact or Fiction⁉️ This is fiction! Despite pulmonary sarcoidosis being the most common form of sarcoidosis, 10% of patients will have no lung involvement at all. Do you have any lung involvement? 110
SarcoidosisUK @sarcoidosisuk.bsky.social · 07/11/2025This #trusteesweek, we want to say a HUGE thank you to our incredible Board of Trustees. Their insights help us to ensure that our commitment to our community remains strong and genuine at every level. Thank you 💙 010
SarcoidosisUK @sarcoidosisuk.bsky.social · 06/11/2025Sign up to support SarcoidosisUK on the easyfundraising app today and we’ll get a £2 bonus! Using the easyfundraising app means you'll raise free funds for us whenever you shop online this Black Friday and Christmas — at no extra cost to you. www.easyfundraising.org.uk/easyfundrais... 000
SarcoidosisUK @sarcoidosisuk.bsky.social · 29/10/2025Jess’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. 000
SarcoidosisUK @sarcoidosisuk.bsky.social · 27/10/2025A 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...join.easyfundraising.org.ukYou spend, brands donate to SarcoidosisUK.Help us when you shop with 7,000+ brands. Join now. 000
SarcoidosisUK @sarcoidosisuk.bsky.social · 10/10/2025Today 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... 011
SarcoidosisUK @sarcoidosisuk.bsky.social · 23/09/2025We 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... 000
SarcoidosisUK @sarcoidosisuk.bsky.social · 16/09/2025We’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... 000
SarcoidosisUK @sarcoidosisuk.bsky.social · 12/09/2025We’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 💙 010
SarcoidosisUK @sarcoidosisuk.bsky.social · 10/09/2025Join 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. 000
SarcoidosisUK @sarcoidosisuk.bsky.social · 03/09/2025We 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... 010
SarcoidosisUK @sarcoidosisuk.bsky.social · 22/08/2025This 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! 🎉 000
SarcoidosisUK @sarcoidosisuk.bsky.social · 15/08/2025Join 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! 000
SarcoidosisUK @sarcoidosisuk.bsky.social · 25/07/2025Today, 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... 020
SarcoidosisUK @sarcoidosisuk.bsky.social · 15/07/2025Have 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... 110
SarcoidosisUK @sarcoidosisuk.bsky.social · 14/07/2025We'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.easyfundraising.org.ukYou spend, brands donate to SarcoidosisUK.Help us when you shop with 7,000+ brands. Join now. 000
SarcoidosisUK @sarcoidosisuk.bsky.social · 07/07/2025Join 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! 011
SarcoidosisUK @sarcoidosisuk.bsky.social · 02/07/2025SarcoidosisUK welcomes the UK Government’s decision to remove changes to Personal Independence Payments from the recent welfare bill until after the Timms review. 100
SarcoidosisUK @sarcoidosisuk.bsky.social · 01/07/2025Join 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! 000
SarcoidosisUK @sarcoidosisuk.bsky.social · 24/06/2025In 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! 000
SarcoidosisUK @sarcoidosisuk.bsky.social · 20/06/2025We 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-... 010
SarcoidosisUK @sarcoidosisuk.bsky.social · 18/06/2025It'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... 000
SarcoidosisUK @sarcoidosisuk.bsky.social · 16/06/2025We'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...join.easyfundraising.org.ukYou spend, brands donate to SarcoidosisUK.Help us when you shop with 7,000+ brands. Join now. 000
SarcoidosisUK @sarcoidosisuk.bsky.social · 13/06/2025Do 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 020
SarcoidosisUK @sarcoidosisuk.bsky.social · 10/06/2025Did 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 000
SarcoidosisUK @sarcoidosisuk.bsky.social · 05/06/2025Today, 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 ✨ 000
SarcoidosisUK @sarcoidosisuk.bsky.social · 30/05/2025This 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... 000
SarcoidosisUK @sarcoidosisuk.bsky.social · 29/05/2025It 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-... 000
SarcoidosisUK @sarcoidosisuk.bsky.social · 23/05/2025In 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-... 020
SarcoidosisUK @sarcoidosisuk.bsky.social · 19/05/2025Our 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... 000
SarcoidosisUK @sarcoidosisuk.bsky.social · 15/05/2025Join 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! 011
SarcoidosisUK @sarcoidosisuk.bsky.social · 14/05/2025Thank 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-... 010
SarcoidosisUK @sarcoidosisuk.bsky.social · 29/04/2025Many sarcoidosis patients do not feel supported by the UK public health and social care provision. Our goal is to ensure that anyone affected by sarcoidosis is able to speak to someone who understands you. Find out more about out support services: sarcoidosisuk.org/support/your... 020
SarcoidosisUK @sarcoidosisuk.bsky.social · 25/04/2025We are sending Craig lots of luck luck as he takes on the London Marathon this weekend! 🏃♂️➡️ Craig has shared his journey with sarcoidosis so far: sarcoidosisuk.org/craig-london... Please consider making a donation to show your support: 2025tcslondonmarathon.enthuse.com/pf/craig-hum... 000
SarcoidosisUK @sarcoidosisuk.bsky.social · 24/04/2025Exciting news - we are starting a new SarcoidosisUK Support Group in Exeter! Join us for the first Exeter Support Group meeting taking place on Saturday 14th June at 10:30am. This is an in-person event, please contact info@sarcoidosisuk.org for more details! 000
SarcoidosisUK @sarcoidosisuk.bsky.social · 23/04/2025We are wishing Sue the best of luck as she takes on the London Marathon this weekend! 🎖️ Sue has shared her sarcoidosis journey with us, click here to read more: sarcoidosisuk.org/sue-is-takin... Please consider making a donation to show your support: 2025tcslondonmarathon.enthuse.com/pf/sue-paz 152
SarcoidosisUK @sarcoidosisuk.bsky.social · 22/04/2025Have you registered for our Sarcoidosis Patient Day? Next Tuesday 29th April, we'll be hosting our virtual Patient Day, bringing you 5 different sessions from 9.15am-13.30pm! Click here to register: store.sarcoidosisuk.org/product/sarc... Submit your questions here: forms.gle/1h9kQQNfwFpv... 031
SarcoidosisUK @sarcoidosisuk.bsky.social · 17/04/2025We need your help! Every pound we raise this month will go towards our research fund, investing in a better sarcoidosis future 🔬 Together, we can deepen our understanding of sarcoidosis and work towards better outcomes for patients. Please donate today: www.sarcoidosisuk.org/donate/donat... 020
SarcoidosisUK @sarcoidosisuk.bsky.social · 15/04/2025Today is World Art Day + we are re-sharing this beautiful poem written by Daniela's Daughter, Sara during our 2023 Sarcoidosis Awareness Month💙 "Next time you blow on a dandelion and make a wish: hope that everyone could be as strong and brave as the Sarcoidosis warriors" 020
SarcoidosisUK @sarcoidosisuk.bsky.social · 14/04/2025We have exciting sarcoidosis research news! 📣🔬 We have launched the SarcoidosisUK Research Innovation Award 2025, offering funding for innovative and novel research proposals that seek to address any of our research priorities. Find out more here: www.sarcoidosisuk.org/research/sar... 131
SarcoidosisUK @sarcoidosisuk.bsky.social · 08/04/2025Join Kemi this World Art Day for a cosy night in of sharing and support on the 15th April! Art and creativity can be an amazing outlet for many of us, so whatever your creative expression is, we’d love to see it! Find out more: store.sarcoidosisuk.org/product/open... 010
SarcoidosisUK @sarcoidosisuk.bsky.social · 07/04/2025Today is World Health Day and we want to shout about sarcoidosis 📣 Sarcoidosis is a rare disease where lumps called granulomas develop at different sites within the body, and can affect any organ. Click here to find out more: www.sarcoidosisuk.org/information-... 031
SarcoidosisUK @sarcoidosisuk.bsky.social · 04/04/2025Many sarcoidosis symptoms can be 'invisible' making it hard to share how you feel. We have a number of infographics available as a visual way to help to explain how sarcoidosis may be affecting you. See all of our infographics here: www.sarcoidosisuk.org/sarcoidosis-... 042