Friend of Rare Disease Day 2011
Ehlers Danlos Syndrome Support group
Description of the activity: We are trying to gather as many case studies as possible to help raise awareness of our rare genetic condition that effects so many more people than first thought.
Contact person: Lara Bloom
Website: www.ehlers-danlos.org
Description of organiser: Other Patient Organisation
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 |