Dandy-Walker Syndrome 2021-10-19
2021-10-19
TAGS
Response quality
Questions & Answers
Q1
Partial Answer
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Context
The question arises from a rare but significant medical condition affecting a small number of individuals.
What estimate his Department has made of the number of people with Dandy-Walker syndrome in the UK?
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.
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Assessment & feedback
Did not provide a definitive estimate of the current number of people affected by Dandy-Walker syndrome in the UK, only referenced ongoing studies.
Response accuracy
Q2
Partial Answer
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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.
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?
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.
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Assessment & feedback
Did not commit to establishing an NHS centre of excellence, only indicated willingness to discuss the issue further.
Response accuracy