SarcoidosisUK
@sarcoidosisuk.bsky.social
SarcoidosisUK is the national sarcoidosis charity. We provide support and information to anyone affected. We also raise awareness and fund research into a cure. Find out more: www.sarcoidosisuk.org
This #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 💙
Their insights help us to ensure that our commitment to our community remains strong and genuine at every level. Thank you 💙
November 7, 2025 at 11:34 AM
This #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 💙
Their insights help us to ensure that our commitment to our community remains strong and genuine at every level. Thank you 💙
Sign 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...
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...
November 6, 2025 at 11:41 AM
Sign 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...
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...
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.
Jess's Rule encourages seeking second opinions and specialist referrals, often crucial for a sarcoidosis diagnosis.
October 29, 2025 at 12:44 PM
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.
Jess's Rule encourages seeking second opinions and specialist referrals, often crucial for a sarcoidosis diagnosis.
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...
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...
You spend, brands donate to SarcoidosisUK.
Help us when you shop with 7,000+ brands. Join now.
join.easyfundraising.org.uk
October 27, 2025 at 11:50 AM
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...
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...
If you have found yourself struggling, take a look at our 'Sarcoidosis and Mental Health' page here: www.sarcoidosisuk.org/support/sarc...
October 10, 2025 at 8:27 AM
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...
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...
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...
September 23, 2025 at 9:01 AM
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...
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...
Click here to 'Have Your Say' today: forms.gle/WPAS8kXBPY2s...
September 16, 2025 at 11:58 AM
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...
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 💙
We are so thankful for their continued support and for raising much needed awareness of sarcoidosis 💙
September 12, 2025 at 11:00 AM
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 💙
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.
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.
September 10, 2025 at 9:36 AM
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.
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...
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...
September 3, 2025 at 10:33 AM
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...
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! 🎉
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! 🎉
August 22, 2025 at 9:38 AM
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! 🎉
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!
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!
August 15, 2025 at 2:33 PM
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!
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...
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...
July 25, 2025 at 12:25 PM
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...
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...
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...
July 15, 2025 at 3:48 PM
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...
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...
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...
You spend, brands donate to SarcoidosisUK.
Help us when you shop with 7,000+ brands. Join now.
join.easyfundraising.org.uk
July 14, 2025 at 9:15 AM
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!
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!
July 7, 2025 at 11:22 AM
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!
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!
SarcoidosisUK welcomes the UK Government’s decision to remove changes to Personal Independence Payments from the recent welfare bill until after the Timms review.
July 2, 2025 at 10:29 AM
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!
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!
July 1, 2025 at 3:09 PM
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!
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 truly benefit from our supportive sarcoidosis community thanks to our remarkable volunteers and supporters. Thank you for everything you do!
June 24, 2025 at 10:11 AM
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 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-...
Check out our newly diagnosed page here: sarcoidosisuk.org/information-...
June 20, 2025 at 9:55 AM
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-...
Check out our newly diagnosed page here: sarcoidosisuk.org/information-...
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...
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...
June 18, 2025 at 8:35 AM
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...
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...
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...
You spend, brands donate to SarcoidosisUK.
Help us when you shop with 7,000+ brands. Join now.
join.easyfundraising.org.uk
June 16, 2025 at 10:27 AM
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
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
June 13, 2025 at 10:25 AM
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
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
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
June 10, 2025 at 9:29 AM
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
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 ✨
Email info@sarcoidosisuk.org to learn how you can get involved ✨
June 5, 2025 at 9:48 AM
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 ✨
Email info@sarcoidosisuk.org to learn how you can get involved ✨