Take Action for World Rare Disease Day on February 28, 2019
ALISO VIEJO, Calif., Feb. 27, 2019 /PRNewswire/ -- In honor of World Rare Disease Day tomorrow, Global Genes®, a leading rare disease patient advocacy organization, takes action across the United States as representatives divide and conquer to drive forward momentum for rare disease patients and advocates.
Global Genes Founder Nicole Boice is representing the rare disease community at the Rare Disease Day Conference 2019 on March 2nd at Notre Dame's Boler-Parseghian Center for Rare and Neglected Diseases. There, she'll be part of a panel addressing community resources and empowerment of rare disease patients. In addition, she's a guest lecturer at Notre Dame's Mendoza College of Business' 10 Years Hence speaker series, exploring issues, ideas and trends likely to affect business and society over the next decade. Boice will speak to advances in the patient advocacy space over the last decade and patient's role in directly driving innovation and progress in the years ahead.
"Collaboration and investment in rare disease will continue to be critical to advancing treatments for these complex conditions as 95 percent of rare diseases still have no treatments available," said Nicole Boice, Founder of Global Genes. "But with the advancement of new technology, patients are becoming more connected and empowered than ever – they are essential participants in drug development and advocacy – which is key to driving innovation and progress in the years to come."
As part of Rare Disease Week on Capitol Hill Global Genes team including Interim Executive Director, Angie Rowe, join more than 500 patient advocates in Washington, DC for a week of events dedicated to legislative advocacy and meeting with Members of Congress to support policies and practices benefitting rare disease research. In addition, the team exhibits at the National Institute for Health's (NIH) Rare Disease Day to raise awareness about rare diseases and NIH research collaborations to advance new treatments.
Global Genes kicked-off its month-long emphasis on rare disease awareness with the launch of its new website and RARE Portal – an online community for patient connection and collaboration. The portal is a space where patients and advocates are eliminating barriers to rare disease information and resources. Within this space, they are connecting globally, sharing stories, creating and joining rare disease events and finding tools and resources personalized to their unique needs.
World Rare Disease Day is an annual observance on the last day of February to raise awareness for the more than 350 million people worldwide affected by rare disease - which is greater than the US population. To date, there are more than 7,000 identified rare diseases, with more being discovered every day.
To take action this Rare Disease Day or to learn more about Global Genes, please visit globalgenes.org.
About Global Genes®
Global Genes® is a 501(c)(3) nonprofit organization on a mission to connect, empower and inspire the rare disease community. We provide hope for more than 350 million people affected by rare disease around the globe. To date, we've educated 6 million people in 100 countries about rare disease, equipped 30,000 patients and advocates with tools and resources, and provided $400,000 in support for innovative patient impact programs. This is just the beginning of what we can achieve together. Visit globalgenes.org to get involved today.
SOURCE Global Genes
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