Steve Brine MP

for Winchester & Chandler's Ford

28 FEB 2018

Minister marks Rare Disease Day

Steve Brine spoke at a Parliamentary reception and visited St Thomas' Hospital on Wednesday 28th February as part of his work on the 11th Rare Disease Day.

There are between 5,000 and 8,000 rare diseases that affect the lives of around 3.5 million of the UK population, approximately 80% are of genetic origin. Rare diseases affect around 5 people or fewer in 10,000 and require special, combined efforts to enable patients to be treated effectively. 1 in 17 people will suffer from a rare disease at some point in their lives. In the UK that equates to approximately 3.5 million people.

The Public Health Minister spoke to Rare Disease UK about how this event is celebrated across nearly 70 countries across the world, and how NHS England and the Department of Health and Social Care published jointly an implementation plan for England, which is a long awaited, key step in moving forward.

In addition, he confirmed that the newly established National Genomics Board will help to fulfil the ambitions of the "genomics dream" of faster and better diagnoses and treatments – especially for patients with rare diseases and cancer.

He said: "The true test of success for any of our actions will be real improvements experienced by patients and their families. We must also seize opportunities for collaboration and better ways of making our services more efficient and patient-focussed."

He also spoke about the importance of research, and said that the only way to realise the full potential for improving our knowledge of rare diseases and achieve better treatment and prevention is through novel and sustained research.

He added: "You will all have recognised that the rare diseases landscape has changed dramatically over recent years with many initiatives and scientific advances now coming to fruition. But some change, most notably the potential impact of our separation from the EU, may cause some concern in the rare disease community.

"I would like to reassure you that the Government has two key principles in its approach to the development of a post-Exit relationship with the EU. One, that no patient should be disadvantaged, and two, that the UK should continue to play a leading role promoting public health, both in Europe and around the world."

The reception came after a visit to St Thomas' Hospital, where he took a tour of the Rare Diseases Centre, and took part in a roundtable discussion with clinical staff and patient representatives, before visiting the Epidermolysis Bullosa laboratory to learn more about what the team do.

 

More information ...

Look at St Thomas' coverage of Steve Brine's visit here

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