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

Back to all posts

Upcoming Business – Commons: Select Committee (22 May 2018)
Health and Social Care: Childhood obesity. 2:30 pm; The Wilson Room, Portcullis House
Witnesses: Duncan Selbie, Chief Executive Dr Alison Tedstone, National Director, Public Health England Richard Sangster, Head of Obesity Policy Steve Brine MP, Parliamentary Under-Secretary, Department of Health and Social Care Margot James MP, Minister of State for the Department for Digital, Culture, Media and Sport

Written Answers — Department of Health and Social Care: Malnutrition and Obesity (18 May 2018)
Steve Brine: To help tackle malnutrition in acute and community settings, NHS England published guidance on ‘Commissioning excellent nutrition and hydration’ in October 2015. The implementation of this guidance is a matter for the local National Health Service. The guidance is available at the following link: General practitioners and other...

Written Answers — Department of Health and Social Care: Breast Cancer: Screening (18 May 2018)
Steve Brine: No estimate has been made to date of the cost to the public purse for compensation for the next of kin of women who may have subsequently died of breast cancer due to a missed scan. Public Health England will be undertaking a case review over the coming months.

Contact Steve Brine in Westminster

Call your MP in his Commons office on 0207 219 7189 or email

Early Day Motions (EDMs)

Steve Brine does not sign EDMs - click here to read why.


Sign up to e-newsletter

Sign up for email updates:

First name: *

Last name: *

Email: *

Postcode: *