March 31, 2025
Immunodeficiency UK advocacy activities in Parliament
Immunodeficiency UK continues to advocate for better healthcare access and policy improvements for individuals affected by primary and secondary immunodeficiency. In recent months, the charity has played a key role in two significant initiatives: supporting the UK NHS Genomics Generation Study’s research study using genomics to screen newborn babies and participating in a crucial parliamentary event on the UK’s plasma programme.
The Generation Study, a groundbreaking research initiative, is investigating the benefits of screening newborns for over 110 genes linked to primary immunodeficiency. Immunodeficiency UK recently joined forces with Genetic Alliance UK and Genomics England to present the study’s importance to Members of Parliament. Collectively, they emphasised the need for increased investment and resources to integrate more conditions into the UK’s newborn screening programme, paving the way for earlier diagnoses and life-saving interventions for children with PID.
Immunodeficiency UK also participated in a parliamentary roundtable discussion on the UK’s plasma programme. The event, attended by NHS Blood and Transplant representatives, MPs, and advocacy groups, underscored the critical importance of domestic plasma collection to ensure a stable supply of immunoglobulin therapies for patients who depend on them. Immunodeficiency UK continues to push for policies that will strengthen the UK’s plasma collection infrastructure and safeguard access to this vital treatment.
