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Dandy-Walker Syndrome

Volume 701: debated on Tuesday 19 October 2021

6. What estimate his Department has made of the number of people with Dandy-Walker syndrome in the UK. (903653)

I thank my hon. Friend for raising a question on this rare but important condition. Public Health England’s national disease registration service contributed data to a European Dandy-Walker syndrome epidemiology study back in 2019. The results identified 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.

I thank my hon. Friend for doing the research on this question. One of my constituents, Steven Forster, came to see me during a surgery last summer. His granddaughter, Mia, is suffering with Dandy-Walker syndrome. As there is not the knowledge in the NHS about how best to treat the condition, like many families, when they do eventually find a doctor who has that knowledge, they have to travel a long way to see them and there is a huge cost attached to that. With that in mind, 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?

I thank my hon. Friend for raising his constituent’s granddaughter Mia’s case. 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.