News

England and Scotland have published action plans for 2026.  They focus on four priorities:  helping patients get a final diagnosis faster  increased awareness of rare diseases among healthcare professionals  better coordination of care  improved access to specialist care, treatment and drugs  England  A new Action Plan for Rare Diseases 2026 was launched in England  Scotland   The Scottish Government has published a progress

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 standard includes eight key statements designed to improve diagnosis, support, treatment access and research opportunities for people with rare conditions.  The standards set out a clear, nationally recognised benchmark for the standard of care people with rare

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 the condition itself.  The journey from symptoms to diagnosis, and from diagnosis to treatment, is often marked by long delays, uncertainty and unequal access to care. The stark fact is that these common themes are shared by more than 3.5

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 are staffed, leaving primary and secondary immunodeficiency patients at serious risk.  The BSI-CIPN represents over 220 professionals in the clinical immunology space including doctors, healthcare scientists, pharmacists and specialist nurses.    The report is endorsed by The Association of

We are delighted to launch a new report, Misunderstood and Underserved, summarising the key findings of a 2023 patient experience survey and key recommendations for policymakers. You may recall this project has been developed in collaboration between Immunodeficiency UK and Takeda UK Limited. Both Immunodeficiency UK and Takeda UK Limited have provided input into the development

A new report: *Beyond the Pandemic: Strengthening Access to COVID-19 Therapies for High-Risk Patients in England, has revealed significant regional inequalities in access to life-saving COVID-19 treatments for clinically vulnerable people. Immunodeficiency UK contributed to the report.  This report expands on the topics covered in their previous report: Beyond the pandemic: Addressing disparities in timely

A new report by The Royal College of Pathologists has found that three quarters of UK immunology services do not have enough staff to meet current clinical demand — leaving primary and secondary immunodeficiency patients at serious risk of delayed diagnoses, disrupted treatment, and preventable harm. The Consultant Immunology Workforce Report highlights a growing crisis

Here we summarise the key findings and recommendations from the UK COVID-19 inquiry and the report ‘Beyond the pandemic: Addressing disparities in timely access to COVID-19 therapeutics Policy Report (July 2025)*.   *This report was commissioned and wholly funded by Pfizer but independently authored by Kintiga. It has been reviewed by Pfizer to ensure ABPI Code

On Wednesday, March 20th, Immunodeficiency UK played a key role in a momentous event at the House of Commons – The Plasma Parliamentary Reception. This event, sponsored by MP Munira Wilson, brought together Members of Parliament, healthcare professionals, and patients to discuss the critical importance of plasma donation in the UK. Huge thanks to the

From 6 November 2023, eligible patients will be able to pick up free rapid lateral flow tests from a local pharmacy. This will replace the current online and telephone ordering services for free lateral flow tests provided by GOV.UK and 119.  When picking up lateral flow tests, the pharmacy may ask you questions about