Feb 16 - NORD
NORD: How Patient Advocacy Organisations are Leading Efforts for Rare Diseases
National Organization for Rare Disorders (NORD), is a remarkable American nonprofit dedicated to supporting those with rare conditions. Here's a quick peek into their journey:
Making of NORD: Six months prior to the Orphan Drug Act, Abbey Meyers and fellow support group members pondered the group's future. They decided to transform it into an organization focused on implementing the new law effectively.
Overcoming Challenges: NORD's formation initially sparked concerns among other rare disease support organizations, but Abbey Meyers allayed their fears by emphasizing collaboration over competition. Despite financial hurdles, NORD developed a Rare Disease Database, a vital resource for the community. They also confronted discrimination issues, shedding light on the plight of individuals with disabilities.
Significant Contributions: NORD is a powerhouse of patient-led initiatives, supporting over 340 advocacy organizations and half a million rare disease patients. Their impactful activities include funding groundbreaking research, lobbying for crucial legislation like the Orphan Drug Act, and even advocating for provisions in healthcare laws to benefit patients. They've spearheaded initiative like Rare Disease Day in 2009, in USA.
Global Impact: NORD isn't just making waves in the USA, It is also assisting other countries in developing their orphan drug legislation.
👏 Let's applaud NORD for their unwavering dedication to the rare disease community! 🎉
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