More research urged for rare spinal cord diseasesRSS Feed

Research into rare diseases affecting the spinal cord and vertebrae is lacking across the UK, it has been claimed.

Information made available to people suffering from rare conditions such as spinal muscular atrophy is also scarce, according to Rare Disease UK.

Chair of the national alliance Alastair Kent explained: "There are tens of thousands of people in Wales and millions of people in the UK living with rare conditions.

"Raising awareness of rare diseases and the need for a co-ordinated strategy for the diagnosis, treatment and research of rare diseases is hugely important."

In June, Rare Disease UK welcomed a commitment by EU health ministers to implement strategies for the treatment.

Mr Kent described the plans as an "important step forward".

Worldwide, more than 6,000 rare conditions have been identified, affecting over 3.5 million people in the UK and 30 million people across the EU.

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