Today is World Rare Disease Day, and The Global Genes Project, an Orange County-based advocacy group, explain the day’s significance and how you can participate.
Raising a child with a rare disease can be incredibly difficult. Besides a rare disease’s physical and economic impact on a patient and their family, a sense of isolation and hopelessness often comes with hearing an unfamiliar diagnosis. Being enveloped in the community of patients and parents can be the right choice for many.
A world-class children’s hospital and advocacy organization can help with treatment and coping. Luckily, Orange County residents have both right in their back yard.
Based in Aliso Viejo, The Global Gene Project’s mission is to eliminate the challenges of rare diseases by equipping patients to become successful advocates, and through education and empowerment, become activists for their disease. Global Genes unites experts, advocates and patients of all ages to stand together in hope for treatments and cures for the estimated 7,000 rare and genetic diseases that affect approximately 30 million Americans and more than 250 million people worldwide.
Support, awareness and understanding must be priorities. That’s why The Global Genes Project, as well as multiple support groups, nonprofit organizations and patient-based registries have come together each year to raise awareness for the rare disease community as a whole. This event, World Rare Disease Day, takes place on the last day of February each year and is recognized globally.
Today, schools and healthcare providers will celebrate worldwide through special lessons, webinars and educational series, and informational panels.
For you, participating in World Rare Disease Day is as easy as putting on your favorite pair of jeans. In 2010, the Global Gene Project launched the “Wear That You Care” campaign, wherein supporters wear denim and a special ribbon to show support for those affected by rare diseases.
Learn more about The Global Gene Project, and find resources and more information about rare diseases.
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