Commons Sense

House of Commons · Ministers' Questions

Dandy-Walker Syndrome

Tuesday 19 October 2021 · 2 questions

Summarised by AI from the official record, so it can contain mistakes.

Read the full transcript on Parliament.uk

At a glance

Answered 0 Partly answered 2 Not answered 0

Key points

  • Public Health England estimates Dandy-Walker syndrome occurs in about 2.7 live births per 100,000.
  • The Government established the UK Rare Diseases Framework in January to raise awareness of rare conditions.
  • Officials are working with partners including Health Education England to address awareness of rare diseases.

Topics (select to filter)

Questions & Answers

Q1 Simon Fell
NHS
Context

The question arises from a rare but significant medical condition affecting a small number of individuals.

Question

What estimate his Department has made of the number of people with Dandy-Walker syndrome in the UK?

Answer from Maria Caulfield

Public Health England's national disease registration service contributed data to a European Dandy-Walker syndrome epidemiology study identifying that the condition occurs in about 2.7 live births per 100,000. More work is currently being done to report on the number of people living with the condition in the United Kingdom.

Partly answered

Not addressed: Did not provide a definitive estimate of the current number of people affected by Dandy-Walker syndrome in the UK, only referenced ongoing studies.

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Q2 Simon Fell
NHS
Context

A constituent's granddaughter, Mia, suffers from Dandy-Walker syndrome and the family faces difficulties in accessing specialised medical care due to a lack of knowledge among healthcare professionals.

Question

Will my hon. Friend agree to meet some of the families across the UK who are trying to get together a support group on the issue, and consider putting together an NHS centre of excellence so that parents and carers know where to go for help?

Answer from Maria Caulfield

With over 7,000 rare conditions, awareness among healthcare professionals can be difficult. That is why in January this year the Government set up the UK Rare Diseases Framework whereby officials are working with partners including Health Education England to raise awareness of rare conditions such as Dandy-Walker so that we provide training for staff and target education for healthcare professionals. I would be happy to meet him and his constituent to talk about this and listen to some of their concerns and experiences.

Partly answered

Not addressed: Did not commit to establishing an NHS centre of excellence, only indicated willingness to discuss the issue further.

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