Skip to main content

Hereditary angioedema awareness day

EDM (Early Day Motion) 45: tabled on 16 May 2022

Tabled in the 2022-23 session.

This motion has been signed by 10 Members. It has not yet had any amendments submitted.

Motion text

That this House notes that Hereditary Angioedema (HAE) day takes place on Monday 16 May 2022 with the aim of promoting awareness of this rare disease amongst policymakers and healthcare professionals; recognises that the 1 in 10,000 to 1 in 50,000 people living with HAE in the UK have their daily lives significantly impacted by the disease due to unpredictable and frequent attacks; commends the important work patient organisations, such as HAE UK, have done to support and advocate for those living with HAE; welcomes the commitments of the Rare Disease Framework to improve health outcomes for rare disease populations; and urges policymakers and key stakeholders to make efforts to reduce variation in the standards of care and access to treatment experienced by HAE patients across the UK by ensuring the successful delivery of national Rare Diseases Action Plans.