Global Genes® is one of the leading rare disease patient advocacy organizations in the world. 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 just a few rare disease parent advocates and foundations, has since grown to over 500 global organizations.
Their mission is to eliminate the challenges of rare disease.
“We build awareness, educate the global community, and provide critical connections and resources that equip advocates to become activists for their disease.”
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.
While individual rare diseases have small patient populations, collectively the rare disease community is larger than the AIDS and Cancer communities combined. Despite its size, the community lacks a unified voice, as only 15% of rare diseases have organizations or foundations providing support or driving research.
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. According to estimates from the NIH, it will take 10,000 years at the current rate of FDA drug approvals to find therapies for all people suffering from rare diseases.
Support the Global Genes® movement today by getting involved.
Many of their leaders support children, family or friends with rare diseases. They understand the fight on a deep personal level and keep in mind the needs of our community at all times.
Global Genes® and their leaders are committed to ensuring that our programs support our worldwide mission of awareness and outreach, education, innovation and technology and research, and collaborative partnerships. (From www.globalgenes.org)