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Since then, the organization has led the way in voicing the needs of the rare disease community, driving supportive policies, furthering education, advancing medical research, and providing patient and family services for those who need them most. Together with over 300 disease-specific member organizations, more than 17,000 Rare Action Network advocates across all 50 states, and national and global partners, NORD delivers on its mission to improve the lives of those impacted by rare diseases. Visit. NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. The National Organization for Rare Disorders (NORD) is the leading independent advocacy organization representing all patients and families affected by rare diseases in the United States. zANTI TM is a mobile penetration testing toolkit that lets security managers assess the risk level of a network with the.
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The "Part One: Navigating DEI in Rare Disease Nonprofits," toolkit is based on NORD's 2021 DEI Webinar Series for Rare Disease Nonprofits, a three-part series focused on the foundation of diversity, equity, and inclusion, their applicability to the rare disease community, and how rare disease nonprofits can increase engagement with marginalized communities.Ībout the National Organization for Rare Disorders (NORD) NORD brings together rare disease patients, caregivers, leaders, researchers, clinicians, regulators, advocates, and industry to better understand and fight for diversity, equity and inclusion within the rare disease community. "NORD's vision is to help build a more equitable future in which all of the more than 25 million Americans living with a rare disease have access to the care they need to survive and thrive."
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Social determinants of health – including income, education, and even one's own zip code – create significant barriers that lead to delays in diagnosis, difficulty accessing treatments, and increased mortality rates," said Peter Saltonstall, President and CEO of NORD. Lynn Hicks, Miller’s chief of staff, said Iowa was a leader in that investigation and a 2020 lawsuit alleging Google was using anti-competitive techniques in its search engines and advertising. "NORD has long advocated for adequate, accessible, equitable and affordable healthcare coverage, especially considering the rare disease community includes a number of marginalized patient communities. The suit came out of a massive investigation that began in September 2019 and involved Iowa and most other states.