Friend of Rare Disease Day 2011
Cavernoma Alliance UK
Description of the activity: Cavernomas are a cluster of abnormal blood vessels in the brain or spinal cord. Cavernoma Alliance UK will put a message on our website for members to contact their MP. Also participating in Brain Awareness Week. Two events. Liverpool and London, Queen Square. Asymptomatic cavernoma affect 1 in 600 people. Only recently diagnosable since the introduction of MRI scanning, the figure in the population who have experienced bleeds is significantly higher.
Contact person: Ian Stuart
Website: www.cavernoma.org.uk
Description of organiser: Other
Country:
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Who are "Friends of Rare Disease Day? Individuals, Patients, Patient Organisations, health professionals, researchers, drug developers, public health authorities and everyone having an interest in rare diseases are invited to join this year's campaignBecome a Friend of Rare Disease Day |