MP Oliver Letwin voices support for rare disease charity

Courtesy of the Dorset Echo

7:00am Wednesday 11th March 2015

A MAN from Dorchester who founded a charity to support those with a little known brain condition has been praised by his local MP.

Dr Ian Stuart, who set up Cavernoma Alliance UK in 2005, met with West Dorset MP Oliver Letwin at the Houses of Parliament to mark the Rare Diseases Day event.

Mr Letwin was pleased to show his support for people who have rare diseases like cavernoma.

Rare Diseases Day aims to raise awareness amongst the general public and decision-makers about diseases that are not well known and educate people about the impact of patient’s lives.

The event highlighted the need to implement the UK Strategy for Rare Diseases, which was published in November 2013 and has support from all political parties.

Mr Letwin said “I was pleased to meet with Dr Ian Stuart from Cavernoma Alliance UK and learn more about brain cavernoma and the support that the charity gives.

“It is all too easy to forget rare diseases - and the Alliance ensures that this can never happen.

“I look forward to further discussions about the support Cavernoma patient’s need.”

Cavernoma Alliance UK Founder and Co-ordinator Dr Stuart said: “We back The UK Strategy for Rare Diseases and its commitments which will help people who have cavernoma.

“Cavernomas are clusters of abnormal blood vessels found in the brain and spinal cord.

“Cavernomas can measure from a few millimetres to several centimetres in size and can cause serious health problems.

“Cavernoma can cause dizziness, numbness of the face, arms or legs, epileptic seizures, double vision, slurred speech and sometimes permanent neurological damage.”

Cavernoma Alliance is the only organisation in Britain that provides advice and support to those with cavernoma and works closely with NHS neurological specialists.

Ian Stuart further added “In Britain each year one person in 400,000 is newly diagnosed with a cavernoma with symptoms, although it is estimated that one person in six hundred has a brain cavernoma which is currently dormant.

“A cavernoma can suddenly bleed and cause serious health issues.”

The UK Strategy for Rare Diseases has been signed by health ministers of each country in the United Kingdom and has attracted cross party support.

It contains 51 distinct commitments that are designed to improve health and social care for rare disease patients.

The commitments cover five key areas including empowering patients and families affected by rare diseases, identification and prevention of rare diseases through screening and improving diagnosis and early intervention through medical training and access to genetic tests.

Other key areas are improving the coordination of multidisciplinary care and increasing and coordinating research into rare diseases.