National conversation launched
The Minister for rare diseases at the Department of Health and Social Care, Baroness Blackwood, announced a national conversation this year to better understand how care can be improved for those living with a rare disease.
Survey input sought
As part of this, the government is currently seeking input (in the form of a survey) from the rare disease community across the UK. This includes patients, families and carers, GPs, and industry experts to identify the major challenges faced by patients and the people and organisations that care for them.
The survey takes around 10-20 minutes to complete. It is open until Friday, 29 November.
It is an opportunity to make your experiences heard. Whilst the survey is for over 16’s an adult can complete it on behalf of a child.
Feed in to government strategy
The themes identified in the survey will feed into the framework to follow the current UK Strategy on Rare Diseases, which runs until the end of 2020.
The AGSD-UK’s CEO, Neil Bradbury, will be at the UK forum for the conversation. He said,
“We welcome the chance to put the case forward to the government directly for better treatments and healthcare for rare disease patients, and in particular GSD patients.”
Photo: Baroness Blackwood, UK Minister for rare diseases.