EDM: Rare Disease Day and Achalasia

Rare Disease Day and Achalasia

Tabled by Rebecca Long Bailey (Labour) 20 signatures

The motion

That this House marks Rare Disease Day on 28 February 2026; recognises achalasia as a rare and serious swallowing condition affecting the oesophagus, causing severe pain, malnutrition and significant impacts on physical and mental health; notes that around 6,000 people are estimated to be living with achalasia in the UK; commends the work of Achalasia Action, the only UK charity dedicated solely to supporting people with achalasia; welcomes the publication of its recent report entitled Misunderstood, Mistreated and Fighting to be Heard, which found widespread and systemic delays in diagnosis, high rates of misdiagnosis including as anxiety, acid reflux and eating disorders, and disproportionate impacts on women; further notes that over half of respondents experienced multiple misdiagnoses and more than a quarter waited over three years for a correct diagnosis; acknowledges the report’s findings on fragmented diagnostic pathways, limited awareness of achalasia among healthcare professionals, and the heavy burden placed on patients to self-advocate; and calls on the Government and NHS England to engage with and act on the report’s recommendations, including improving professional training and awareness of rare diseases, addressing gender bias in symptom interpretation, establishing clearer and faster diagnostic pathways including access to oesophageal manometry, strengthening post-diagnosis support and communication, and renewing the UK Rare Diseases Framework to reduce diagnostic delays and improve outcomes for people living with rare conditions.

Signatories (20)