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Round-up from Rare Disease Day 2026
England and Scotland have published action plans for 2026. They focus on four priorities: helping patients get a final diagnosis faster increased awareness of
NICE Quality Standard for Rare Diseases
A new quality standard published by NICE sets out what good care should look like for people living with rare diseases across the NHS. The
Unlocking patient access to innovative rare disease medicines, why ‘rare’ still means waiting for too many patients
Why ‘rare’ still means waiting for too many patients Living with a rare disease such as a primary or secondary immunodeficiency brings challenges that go far beyond
BSI-CIPN report reveals shortages and wide variations in immunology and allergy staffing across the UK
A new report by British Society for Immunology Clinical Immunology Professional Network’s (BSI-CIPN) has found serious issues in the way that immunology and allergy services
Update on our 2023 patient experience survey
We are delighted to launch a new report, Misunderstood and Underserved, summarising the key findings of a 2023 patient experience survey and key
New report exposes unequal access to COVID-19 treatments for high-risk patients
A new report: *Beyond the Pandemic: Strengthening Access to COVID-19 Therapies for High-Risk Patients in England, has revealed significant regional inequalities in
New report warns of crisis in care for immunodeficiency patients
A new report by The Royal College of Pathologists has found that three quarters of UK immunology services do not have enough
Disparities in timely access to COVID-19 therapeutics
Here we summarise the key findings and recommendations from the UK COVID-19 inquiry and the report ‘Beyond the pandemic: Addressing disparities in
Immunodeficiency UK Champions Domestic Plasma Donation at Parliamentary Reception
On Wednesday, March 20th, Immunodeficiency UK played a key role in a momentous event at the House of Commons – The Plasma
Changes in access to free lateral flow tests in England
From 6 November 2023, eligible patients will be able to pick up free rapid lateral flow tests from a local pharmacy.
Report on inequalities in healthcare for people with rare diseases
The Specialised Healthcare Alliance (SHCA) has published the report ‘Rare diseases, common inequalities: bringing rare diseases into the health inequalities agenda’ The
Volunteers still needed for research study
Researchers at Leeds Beckett University are inviting people aged 18+ diagnosed with a Primary or Secondary Antibody Deficiency (PAD/SAD) to participate in
