Author | Lightnews

Immunodeficiency UK @immunodeficiencyuk.bsky.social · 22d

📢 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

Immunodeficiency UK @immunodeficiencyuk.bsky.social · 25d

📢 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

Immunodeficiency UK @immunodeficiencyuk.bsky.social · 29d

Even after diagnosis, just 52% of respondents report a good or very good quality of life (n=288, PID & SID)

Consistency in care is urgently needed

Immunodeficiency UK @immunodeficiencyuk.bsky.social · 29d

📢 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.

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Immunodeficiency UK @immunodeficiencyuk.bsky.social · Jun 24

He loves it! And says it is no longer sore getting the needle in."

By offering practical support, we’re ensuring no one faces this journey alone.

This #SmallCharityWeek, help us spread awareness and grow our impact.

#SmallCharityBigImpact #PIDAwareness #SupportRare 4/4

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Immunodeficiency UK @immunodeficiencyuk.bsky.social · Jun 24

✅ Buzzy Shot Devices: we provided 6 families with these pain-relief tools, making blood draws and immunoglobulin infusions less stressful for children.

💬 A nurse shared: "The weekly infusions for a 6-year-old boy were previously very stressful. The Buzzy has made a massive difference—he loves it!

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Immunodeficiency UK @immunodeficiencyuk.bsky.social · Jun 24

Living with immunodeficiency comes with financial and emotional challenges, but you’re not alone. In 2023/24, via referrals from immunology centres we gave out:

✅ Hardship Grants: 9 grants to help families cover essential treatment-related costs, easing the burden of accessing healthcare. 2/4

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Immunodeficiency UK @immunodeficiencyuk.bsky.social · Jun 24

🧬 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

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Immunodeficiency UK @immunodeficiencyuk.bsky.social · Jun 23

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.

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Immunodeficiency UK @immunodeficiencyuk.bsky.social · Jun 10

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...

Home

Register to be a blood donor, give blood and save lives. Find out more about blood donation.

blood.co.uk

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Immunodeficiency UK @immunodeficiencyuk.bsky.social · Apr 21

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/...

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Immunodeficiency UK @immunodeficiencyuk.bsky.social · Apr 18

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...

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Immunodeficiency UK @immunodeficiencyuk.bsky.social · Apr 17

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!

You spend, brands donate to Immunodeficiency UK.

Help us when you shop with 7,000+ brands. Join now.

www.easyfundraising.org.uk

Immunodeficiency UK @immunodeficiencyuk.bsky.social · Apr 3

Why it matters: Early diagnosis through screening can save lives by ensuring prompt, life-changing treatment like stem cell transplants.

📢 We eagerly await the final decision and continue to advocate for every newborn to have the best start in life. nationalscreening.blog.gov.uk/2025/03/28/f... 3/3

Final data analysis under way to inform SCID screening recommendation

Well over 1 million babies have now been screened for severe combined immune deficiency (SCID) since the September 2021 launch of an in-service evaluation (ISE) in NHS services.

nationalscreening.blog.gov.uk

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Immunodeficiency UK @immunodeficiencyuk.bsky.social · Apr 3

With all the data collected, experts are analysing the impact of screening, including survival rates, hospital stays, and effects on families. The findings will shape the UK National Screening Committee’s (UK NSC) final recommendation 2/3

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Immunodeficiency UK @immunodeficiencyuk.bsky.social · Apr 3

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!

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Immunodeficiency UK @immunodeficiencyuk.bsky.social · Mar 25

This set of statements could form the basis of the development of a quality statement for rare disease.

If you are a patient, carer, or healthcare professional, they want to hear from you.

To complete the survey, please visit www.research.net/r/DMSC6CC by the 22nd April 2/2

Rare Disease Quality Statements 2025

Take this survey powered by surveymonkey.com. Create your own surveys for free.

www.research.net

Immunodeficiency UK @immunodeficiencyuk.bsky.social · Mar 25

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

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Immunodeficiency UK @immunodeficiencyuk.bsky.social · Mar 22

🚨 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

Immunodeficiency UK @immunodeficiencyuk.bsky.social · Mar 18

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/...

Immunodeficiency UK @immunodeficiencyuk.bsky.social · Mar 14

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...

Immunodeficiency UK @immunodeficiencyuk.bsky.social · Mar 13

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.

Lucie's Story

Sorry, this product is unavailable. Please choose a different combination.

www.immunodeficiencyuk.org

Immunodeficiency UK @immunodeficiencyuk.bsky.social · Mar 12

⏰ 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

Immunodeficiency UK @immunodeficiencyuk.bsky.social · Mar 6

This video takes you through the journey-setting up new donor centres, collecting and processing plasma, and sending frozen batches to manufacture. Watch to see how donors across the UK are helping to save & transform lives.

🎥 Watch now! www.youtube.com/watch?v=P0I8...

#UKPlasmaMedicines 2/2

From donations to saving lives: The UK's plasma medicine journey explained | NHS Give Blood

YouTube video by NHS Give Blood

www.youtube.com

Immunodeficiency UK @immunodeficiencyuk.bsky.social · Mar 6

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

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