Unique’s Chief Executive Officer, Dr. Sarah Wynn was delighted to attend a meeting with Sajid Javid MP, the UK’s Secretary of State for Health and Social Care this week. As Unique was one of two patient organisations present, Sarah was able to represent the rare chromosome & gene disorder community to ensure our voice is heard and to discuss England’s Rare Disease Action Plan.
Sarah said: “it was a great opportunity to highlight the challenges and concerns faced by our community. Sajid Javid listened carefully and we look forward to hearing what steps will be taken to address these issues.”
After the event, Mr. Javid tweeted: ‘1 in 17 people will be affected by a rare disease so improving their lives is a priority for me.’
Unique will continue to work with other organisations such as Genetic Alliance UK to do all we can to ensure this does remain a priority for the UK government.