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.
The NHS is facing a critical blood shortage.
Stocks remain low, with a pressing need for 200,000 new donors—especially those with O negative blood, which can be used for most patients.
Sign up to donate: blood.co.uk
Full story via BBC: www.bbc.co.uk/news/article...
Stocks remain low, with a pressing need for 200,000 new donors—especially those with O negative blood, which can be used for most patients.
Sign up to donate: blood.co.uk
Full story via BBC: www.bbc.co.uk/news/article...
Home
Register to be a blood donor, give blood and save lives. Find out more about blood donation.
blood.co.uk
June 10, 2025 at 9:19 AM
The NHS is facing a critical blood shortage.
Stocks remain low, with a pressing need for 200,000 new donors—especially those with O negative blood, which can be used for most patients.
Sign up to donate: blood.co.uk
Full story via BBC: www.bbc.co.uk/news/article...
Stocks remain low, with a pressing need for 200,000 new donors—especially those with O negative blood, which can be used for most patients.
Sign up to donate: blood.co.uk
Full story via BBC: www.bbc.co.uk/news/article...
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...
Please remember to use #easyfundraising EVERY time you shop online.
Over 7,000 brands will donate to Immunodeficiency UK for FREE when you use #easyfundraising to shop with them, so you can support us no matter what you’re buying!
Over 7,000 brands will donate to Immunodeficiency UK for FREE when you use #easyfundraising to shop with them, so you can support us no matter what you’re buying!
You spend, brands donate to Immunodeficiency UK.
Help us when you shop with 7,000+ brands. Join now.
www.easyfundraising.org.uk
April 17, 2025 at 10:47 AM
Please remember to use #easyfundraising EVERY time you shop online.
Over 7,000 brands will donate to Immunodeficiency UK for FREE when you use #easyfundraising to shop with them, so you can support us no matter what you’re buying!
Over 7,000 brands will donate to Immunodeficiency UK for FREE when you use #easyfundraising to shop with them, so you can support us no matter what you’re buying!
At Immunodeficiency UK, we have long championed newborn screening for severe combined immunodeficiency (SCID)—a life-threatening but treatable condition when detected early. Now, over 1 million babies have been screened as part of the NHS in-service evaluation (ISE), marking a major milestone!
1/4
1/4
April 3, 2025 at 8:40 AM
At Immunodeficiency UK, we have long championed newborn screening for severe combined immunodeficiency (SCID)—a life-threatening but treatable condition when detected early. Now, over 1 million babies have been screened as part of the NHS in-service evaluation (ISE), marking a major milestone!
1/4
1/4
Get involved and have your say! The Rare Disease Quality Statement Project is asking the rare disease community to complete their survey to help finalise a set of statements that define what high-quality, sustainable care, treatment, and management should look like for rare diseases. 1/2
Rare Disease Quality Statements 2025
Take this survey powered by surveymonkey.com. Create your own surveys for free.
www.research.net
March 25, 2025 at 11:36 AM
Get involved and have your say! The Rare Disease Quality Statement Project is asking the rare disease community to complete their survey to help finalise a set of statements that define what high-quality, sustainable care, treatment, and management should look like for rare diseases. 1/2
🚨 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...
Lucie, a professional figure skater, faced a life-changing diagnosis of blood cancer at 27. Her subsequent chemotherapy, while successful against cancer, resulted in secondary immunodeficiency.
Read Lucie's story and learn more about SID.
Read Lucie's story and learn more about SID.
Lucie's Story
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www.immunodeficiencyuk.org
March 13, 2025 at 9:18 AM
Lucie, a professional figure skater, faced a life-changing diagnosis of blood cancer at 27. Her subsequent chemotherapy, while successful against cancer, resulted in secondary immunodeficiency.
Read Lucie's story and learn more about SID.
Read Lucie's story and learn more about SID.
⏰ 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
Life-changing plasma medicine made from UK blood and plasma donors is now being used to treat people with immunodeficiencies and other illnesses.
Since February 2021, the NHS worked towards this huge milestone after the Government’s green light to restart UK plasma medicine production. 1/2
Since February 2021, the NHS worked towards this huge milestone after the Government’s green light to restart UK plasma medicine production. 1/2
March 6, 2025 at 10:48 AM
Life-changing plasma medicine made from UK blood and plasma donors is now being used to treat people with immunodeficiencies and other illnesses.
Since February 2021, the NHS worked towards this huge milestone after the Government’s green light to restart UK plasma medicine production. 1/2
Since February 2021, the NHS worked towards this huge milestone after the Government’s green light to restart UK plasma medicine production. 1/2
Making history!
After more than 25 years, plasma medicines made from UK donors are being used to save lives. Plasma contains antibodies that strengthen or stabilise the immune system, and over 8,000 people with primary and secondary immunodeficiency rely on immunoglobulin therapy, 1/4
After more than 25 years, plasma medicines made from UK donors are being used to save lives. Plasma contains antibodies that strengthen or stabilise the immune system, and over 8,000 people with primary and secondary immunodeficiency rely on immunoglobulin therapy, 1/4
March 6, 2025 at 9:19 AM
Making history!
After more than 25 years, plasma medicines made from UK donors are being used to save lives. Plasma contains antibodies that strengthen or stabilise the immune system, and over 8,000 people with primary and secondary immunodeficiency rely on immunoglobulin therapy, 1/4
After more than 25 years, plasma medicines made from UK donors are being used to save lives. Plasma contains antibodies that strengthen or stabilise the immune system, and over 8,000 people with primary and secondary immunodeficiency rely on immunoglobulin therapy, 1/4
🎯 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