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

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

✅ 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!

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

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

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

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

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