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Lisa James Email
Assoc. Director Strategic Advancement . Global Genes
Aliso Viejo, CA
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Global Genes is a leading rare disease advocacy organization with global reach to the worldwide rare community of patients, caregivers, advocates and clinical partners. The non-profit organization promotes the needs of the rare disease community under a unifying symbol of hope the Blue Denim Genes Ribbon. What began as a grassroots movement in 2009 with a few rare disease parent advocates and foundations has grown to over 500 global organizations. Global Genes' mission is to eliminate the challenges of rare disease through public and physician education, building community through social media and supporting research initiatives to find treatments and cures for rare diseases. Rare diseases affect 1 in 10 Americans, 30 million people in the United States, and 350 million people globally. Over 7,000 distinct rare diseases exist and approximately 80 percent are caused by faulty genes. The National Institutes of Health estimates that 50% of people affected by rare diseases are children, making rare diseases one of the most deadly and debilitating for children worldwide. It is estimated that 95% of all rare diseases do not have a single FDA approved drug treatment, and there are currently less than 400 treatments approved by the FDA for the nearly 7000 rare diseases which have been identified.Global Genes Address
28 ArgonautAliso Viejo, CA
United States