Immunodeficiency UK
@immunodeficiencyuk.bsky.social
Helping and giving advice to people living with primary or secondary immunodeficiency. Arming them with the knowledge to manage their condition effectively.
📢 New report, Misunderstood and Underserved (bit.ly/4nWcMhq), developed in collaboration with and funded by Takeda UK Ltd – uncovers a lack of awareness about or access to mental health support for those living with PIDs or SIDs. We are calling for change.
#SeeTheUnseen
#SeeTheUnseen
October 9, 2025 at 8:02 AM
📢 New report, Misunderstood and Underserved (bit.ly/4nWcMhq), developed in collaboration with and funded by Takeda UK Ltd – uncovers a lack of awareness about or access to mental health support for those living with PIDs or SIDs. We are calling for change.
#SeeTheUnseen
#SeeTheUnseen
📢 New report — Misunderstood and Underserved (bit.ly/4nWcMhq) — developed in collaboration with and funded by Takeda UK Ltd, shows people wait unacceptably long for a diagnosis of primary or secondary immunodeficiency.
We need better awareness of the signs of these conditions. #SeeTheUnseen
We need better awareness of the signs of these conditions. #SeeTheUnseen
October 6, 2025 at 4:06 PM
📢 New report — Misunderstood and Underserved (bit.ly/4nWcMhq) — developed in collaboration with and funded by Takeda UK Ltd, shows people wait unacceptably long for a diagnosis of primary or secondary immunodeficiency.
We need better awareness of the signs of these conditions. #SeeTheUnseen
We need better awareness of the signs of these conditions. #SeeTheUnseen
📢 Delighted to launch a new patient experience survey report, Misunderstood and Underserved (www.immunodeficiencyuk.org/wp-content/u...), developed in collaboration with and funded by Takeda UK Ltd.
October 2, 2025 at 1:02 PM
📢 Delighted to launch a new patient experience survey report, Misunderstood and Underserved (www.immunodeficiencyuk.org/wp-content/u...), developed in collaboration with and funded by Takeda UK Ltd.
🧬 Living with an immunodeficiency means that every day infections can become life-threatening.
At Immunodeficiency UK, we offer support, information, and advocacy for people facing these invisible conditions. 1/4
At Immunodeficiency UK, we offer support, information, and advocacy for people facing these invisible conditions. 1/4
June 24, 2025 at 6:25 AM
🧬 Living with an immunodeficiency means that every day infections can become life-threatening.
At Immunodeficiency UK, we offer support, information, and advocacy for people facing these invisible conditions. 1/4
At Immunodeficiency UK, we offer support, information, and advocacy for people facing these invisible conditions. 1/4
It’s #SmallCharityWeek!
We may be small, but our mission is mighty: supporting people living with primary and secondary immunodeficiencies across the UK.
This week, we’re celebrating how we are making a BIG difference despite only being staffed by 1 full-time and 1 part-time staff member.
We may be small, but our mission is mighty: supporting people living with primary and secondary immunodeficiencies across the UK.
This week, we’re celebrating how we are making a BIG difference despite only being staffed by 1 full-time and 1 part-time staff member.
June 23, 2025 at 7:44 AM
It’s #SmallCharityWeek!
We may be small, but our mission is mighty: supporting people living with primary and secondary immunodeficiencies across the UK.
This week, we’re celebrating how we are making a BIG difference despite only being staffed by 1 full-time and 1 part-time staff member.
We may be small, but our mission is mighty: supporting people living with primary and secondary immunodeficiencies across the UK.
This week, we’re celebrating how we are making a BIG difference despite only being staffed by 1 full-time and 1 part-time staff member.
Are you living with an immunodeficiency, or do you know someone who is? Join the Immunodeficiency UK community today and gain access to resources, support, and vital information on managing your condition. #ImmunodeficiencyUK #CommunitySupport www.immunodeficiencyuk.org/our-charity/...
April 21, 2025 at 3:04 PM
Are you living with an immunodeficiency, or do you know someone who is? Join the Immunodeficiency UK community today and gain access to resources, support, and vital information on managing your condition. #ImmunodeficiencyUK #CommunitySupport www.immunodeficiencyuk.org/our-charity/...
The immune system is a complex organisation of cells acting together to protect us from infections. But, ageing can affect the body's ability to protect effectively against infection. So, we've put together a guide that covers how ageing affects us www.immunodeficiencyuk.org/wp-content/u...
April 18, 2025 at 5:34 PM
The immune system is a complex organisation of cells acting together to protect us from infections. But, ageing can affect the body's ability to protect effectively against infection. So, we've put together a guide that covers how ageing affects us www.immunodeficiencyuk.org/wp-content/u...
🚨 10 DAYS TO GO! Time is running out to join #QuitItForImmunodeficiency!
• Support 500,000+ people
• Join an amazing community
• Make a real difference
Don't miss out!
buff.ly/3EiNSqz
• Support 500,000+ people
• Join an amazing community
• Make a real difference
Don't miss out!
buff.ly/3EiNSqz
March 22, 2025 at 8:57 AM
🚨 10 DAYS TO GO! Time is running out to join #QuitItForImmunodeficiency!
• Support 500,000+ people
• Join an amazing community
• Make a real difference
Don't miss out!
buff.ly/3EiNSqz
• Support 500,000+ people
• Join an amazing community
• Make a real difference
Don't miss out!
buff.ly/3EiNSqz
Are you an Immunodeficiency UK member yet? It is completely free to sign up and only takes a few minutes. By becoming a member, you will receive regular updates on our activities. www.immunodeficiencyuk.org/our-charity/...
March 18, 2025 at 10:55 AM
Are you an Immunodeficiency UK member yet? It is completely free to sign up and only takes a few minutes. By becoming a member, you will receive regular updates on our activities. www.immunodeficiencyuk.org/our-charity/...
Living with an immunodeficiency means taking extra precautions. Check out our resources for keeping well when you have an immunodeficiency www.immunodeficiencyuk.org/supporting-y...
March 14, 2025 at 12:20 PM
Living with an immunodeficiency means taking extra precautions. Check out our resources for keeping well when you have an immunodeficiency www.immunodeficiencyuk.org/supporting-y...
⏰ 20 DAYS TO GO! Many of our supporters have signed up for #QuitItForImmunodeficiency—will you join them? Whether it's chocolate, coffee, or social media, your 30-day challenge can transform lives. buff.ly/3EiNSqz
March 12, 2025 at 7:55 AM
⏰ 20 DAYS TO GO! Many of our supporters have signed up for #QuitItForImmunodeficiency—will you join them? Whether it's chocolate, coffee, or social media, your 30-day challenge can transform lives. buff.ly/3EiNSqz
🎯 30 DAYS TO GO! The #QuitItForImmunodeficiency challenge starts April 1st!
• Choose your challenge
• Set up your fundraising page
• Change lives
What will YOU quit for 30 days?
buff.ly/3EiNSqz
• Choose your challenge
• Set up your fundraising page
• Change lives
What will YOU quit for 30 days?
buff.ly/3EiNSqz
March 2, 2025 at 9:54 AM
🎯 30 DAYS TO GO! The #QuitItForImmunodeficiency challenge starts April 1st!
• Choose your challenge
• Set up your fundraising page
• Change lives
What will YOU quit for 30 days?
buff.ly/3EiNSqz
• Choose your challenge
• Set up your fundraising page
• Change lives
What will YOU quit for 30 days?
buff.ly/3EiNSqz
Charlie was the first UK baby diagnosed with SCID through the pilot newborn screening programme. Now he's a happy, healthy preschooler who loves singing and making friends. This is what early diagnosis can do. #RareDiseaseDay #NewbornScreeningSavesLives
buff.ly/42iPDyd
buff.ly/42iPDyd
February 28, 2025 at 3:20 PM
Charlie was the first UK baby diagnosed with SCID through the pilot newborn screening programme. Now he's a happy, healthy preschooler who loves singing and making friends. This is what early diagnosis can do. #RareDiseaseDay #NewbornScreeningSavesLives
buff.ly/42iPDyd
buff.ly/42iPDyd
Two brothers, two different outcomes. Rebecca lost her first son Scott to SCID before screening was available. Her second son Rhys was tested at birth, diagnosed early, and is now thriving in school. Early diagnosis saves lives. Read Rebecca’s story at buff.ly/4aqA21o <a href="/hashtag/RareDiseaseDay" class="hover:underline text-blue-600 dark:text-sky-400 no-card-link">#RareDiseaseDay
February 28, 2025 at 1:19 PM
Two brothers, two different outcomes. Rebecca lost her first son Scott to SCID before screening was available. Her second son Rhys was tested at birth, diagnosed early, and is now thriving in school. Early diagnosis saves lives. Read Rebecca’s story at buff.ly/4aqA21o <a href="/hashtag/RareDiseaseDay" class="hover:underline text-blue-600 dark:text-sky-400 no-card-link">#RareDiseaseDay
If you met Charlie today, you'd have no idea of the turbulent start he had to life. Thanks to the newborn screening for SCID pilot, he was diagnosed at just 5 days old and received life-saving treatment. Every baby deserves this chance. Read Charlie’s story at buff.ly/42iPDyd
February 28, 2025 at 11:18 AM
If you met Charlie today, you'd have no idea of the turbulent start he had to life. Thanks to the newborn screening for SCID pilot, he was diagnosed at just 5 days old and received life-saving treatment. Every baby deserves this chance. Read Charlie’s story at buff.ly/42iPDyd
This #RareDiseaseDay, we're highlighting why newborn screening for Severe Combined Immunodeficiency (SCID) is crucial.
Early diagnosis means:
• Treatment can begin before infections take hold
• Better transplant outcomes
• More lives saved
Early diagnosis means:
• Treatment can begin before infections take hold
• Better transplant outcomes
• More lives saved
February 28, 2025 at 9:15 AM
This #RareDiseaseDay, we're highlighting why newborn screening for Severe Combined Immunodeficiency (SCID) is crucial.
Early diagnosis means:
• Treatment can begin before infections take hold
• Better transplant outcomes
• More lives saved
Early diagnosis means:
• Treatment can begin before infections take hold
• Better transplant outcomes
• More lives saved
🤝 Everything's better with friends! Create your # QuitItForImmunodeficiency team and:
• Support each other
• Share your journey
• Make memories
• Change lives
Tag your squad below! 👇
buff.ly/3EiNSqz
• Support each other
• Share your journey
• Make memories
• Change lives
Tag your squad below! 👇
buff.ly/3EiNSqz
February 28, 2025 at 8:52 AM
🤝 Everything's better with friends! Create your # QuitItForImmunodeficiency team and:
• Support each other
• Share your journey
• Make memories
• Change lives
Tag your squad below! 👇
buff.ly/3EiNSqz
• Support each other
• Share your journey
• Make memories
• Change lives
Tag your squad below! 👇
buff.ly/3EiNSqz
🌟 TOMORROW is Rare Disease Day 2025! 🌐
The day we've been waiting for is almost here! Tomorrow, join us in raising our voices, spreading awareness, and standing in solidarity with those affected by immunodeficiency. Let's make Rare Disease Day 2025 unforgettable! 💙🦋 #RareDiseaseDay
The day we've been waiting for is almost here! Tomorrow, join us in raising our voices, spreading awareness, and standing in solidarity with those affected by immunodeficiency. Let's make Rare Disease Day 2025 unforgettable! 💙🦋 #RareDiseaseDay
February 27, 2025 at 10:11 AM
🌟 TOMORROW is Rare Disease Day 2025! 🌐
The day we've been waiting for is almost here! Tomorrow, join us in raising our voices, spreading awareness, and standing in solidarity with those affected by immunodeficiency. Let's make Rare Disease Day 2025 unforgettable! 💙🦋 #RareDiseaseDay
The day we've been waiting for is almost here! Tomorrow, join us in raising our voices, spreading awareness, and standing in solidarity with those affected by immunodeficiency. Let's make Rare Disease Day 2025 unforgettable! 💙🦋 #RareDiseaseDay
This Rare Disease Day, we're shining a light on Severe Combined Immunodeficiency (SCID) and the critical need for newborn screening across the UK! 🔬👶
Early diagnosis of SCID can be life-saving. Yet currently, not every newborn is screened for this rare but serious condition at birth.
Early diagnosis of SCID can be life-saving. Yet currently, not every newborn is screened for this rare but serious condition at birth.
February 26, 2025 at 10:13 AM
This Rare Disease Day, we're shining a light on Severe Combined Immunodeficiency (SCID) and the critical need for newborn screening across the UK! 🔬👶
Early diagnosis of SCID can be life-saving. Yet currently, not every newborn is screened for this rare but serious condition at birth.
Early diagnosis of SCID can be life-saving. Yet currently, not every newborn is screened for this rare but serious condition at birth.
🏢 Looking for a team-building activity with purpose? Get your workplace involved in # QuitItForImmunodeficiency!
• Bond with colleagues
• Support a great cause
• Make a real difference
Tag your workplace below! 👇
https://buff.ly/3EiNSqz
• Bond with colleagues
• Support a great cause
• Make a real difference
Tag your workplace below! 👇
https://buff.ly/3EiNSqz
February 24, 2025 at 7:50 AM
🏢 Looking for a team-building activity with purpose? Get your workplace involved in # QuitItForImmunodeficiency!
• Bond with colleagues
• Support a great cause
• Make a real difference
Tag your workplace below! 👇
https://buff.ly/3EiNSqz
• Bond with colleagues
• Support a great cause
• Make a real difference
Tag your workplace below! 👇
https://buff.ly/3EiNSqz
"📅 Countdown to Rare Disease Day 2025: 7 Days to Go! 🦓
As we approach Rare Disease Day, let's shine a spotlight on the strength and resilience of those facing immunodeficiency. Together, we can raise awareness and make a difference. Stay tuned for stories that inspire, educate, and unite! 💙🌐
As we approach Rare Disease Day, let's shine a spotlight on the strength and resilience of those facing immunodeficiency. Together, we can raise awareness and make a difference. Stay tuned for stories that inspire, educate, and unite! 💙🌐
February 21, 2025 at 10:05 AM
"📅 Countdown to Rare Disease Day 2025: 7 Days to Go! 🦓
As we approach Rare Disease Day, let's shine a spotlight on the strength and resilience of those facing immunodeficiency. Together, we can raise awareness and make a difference. Stay tuned for stories that inspire, educate, and unite! 💙🌐
As we approach Rare Disease Day, let's shine a spotlight on the strength and resilience of those facing immunodeficiency. Together, we can raise awareness and make a difference. Stay tuned for stories that inspire, educate, and unite! 💙🌐
Our resource library contains over 70 downloadable guides that cover a wide range of topics for people living with immunodeficiency. We are always updating the library and creating new guides to make it as useful as possible for the immunodeficiency community. https://buff.ly/3ZXWjiu
February 20, 2025 at 10:03 AM
Our resource library contains over 70 downloadable guides that cover a wide range of topics for people living with immunodeficiency. We are always updating the library and creating new guides to make it as useful as possible for the immunodeficiency community. https://buff.ly/3ZXWjiu
What your fundraising provides:
• Mental health support programs
• Hardship grants for treatment travel
• Educational resources for families
30 days of your commitment = years of support for others
Join # QuitItForImmunodeficiency today! https://buff.ly/3EiNSqz
• Mental health support programs
• Hardship grants for treatment travel
• Educational resources for families
30 days of your commitment = years of support for others
Join # QuitItForImmunodeficiency today! https://buff.ly/3EiNSqz
February 20, 2025 at 7:48 AM
What your fundraising provides:
• Mental health support programs
• Hardship grants for treatment travel
• Educational resources for families
30 days of your commitment = years of support for others
Join # QuitItForImmunodeficiency today! https://buff.ly/3EiNSqz
• Mental health support programs
• Hardship grants for treatment travel
• Educational resources for families
30 days of your commitment = years of support for others
Join # QuitItForImmunodeficiency today! https://buff.ly/3EiNSqz
Understanding targeted therapies can be complex, but knowledge is power. IPOPI's guide breaks down the latest treatment options for Primary Immunodeficiencies (PIDs
Visit https://buff.ly/3E4NFr2 to access your copy.
Visit https://buff.ly/3E4NFr2 to access your copy.
February 19, 2025 at 10:02 AM
Understanding targeted therapies can be complex, but knowledge is power. IPOPI's guide breaks down the latest treatment options for Primary Immunodeficiencies (PIDs
Visit https://buff.ly/3E4NFr2 to access your copy.
Visit https://buff.ly/3E4NFr2 to access your copy.
People with PID rely on a range of different treatments being available. These include immunoglobulin therapy and stem cell transplants (BMT). Find out more about treatment options for those living with a primary immunodeficiency here: https://buff.ly/4jrpWRW
February 18, 2025 at 10:00 AM
People with PID rely on a range of different treatments being available. These include immunoglobulin therapy and stem cell transplants (BMT). Find out more about treatment options for those living with a primary immunodeficiency here: https://buff.ly/4jrpWRW