{"id":98980,"date":"2022-11-16T14:45:50","date_gmt":"2022-11-16T19:45:50","guid":{"rendered":"https:\/\/rarediseases.org\/rare-disease-advocates-and-supporters-share-the-importance-of-raising-awareness-ahead-of-rare-disease-day-2023\/"},"modified":"2025-12-22T14:14:53","modified_gmt":"2025-12-22T19:14:53","slug":"rare-disease-advocates-and-supporters-share-the-importance-of-raising-awareness-ahead-of-rare-disease-day-2023","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/rare-disease-advocates-and-supporters-share-the-importance-of-raising-awareness-ahead-of-rare-disease-day-2023\/","title":{"rendered":"Rare Disease Advocates and Supporters Share the Importance of Raising Awareness Ahead of Rare Disease Day 2023"},"content":{"rendered":"

With 100 days till Rare Disease Day 2023, organizations and individuals across the country join the National Organization for Rare Disorders (NORD) to help make a difference<\/span><\/i>\u00a0<\/span>for rare disease patients and families<\/span><\/i>\u00a0<\/span><\/h3>\n

QUINCY, MA, November 16, 2022<\/span><\/b> \u2014 On February 28, 2023, the rare disease community worldwide will celebrate Rare Disease Day.<\/span>\u00a0<\/span><\/p>\n

\u00a0<\/span>Now more than ever, it is important to highlight the challenges of rare disease. Over 25 million Americans and their families are living with a rare disease and 50% of those affected are children. 90% of all rare diseases have no FDA approved therapy, and so educating the public and encouraging their support is essential.<\/span><\/p>\n

\u201cWe meet extraordinary people every day in our work,\u201d said NORD President and CEO <\/span>Peter L. Saltonstall<\/span><\/b>. \u201cThe courage that patients and families display is an inspiration, and we think it\u2019s critically important to bring the realities of living with a rare diagnosis to the forefront on Rare Disease Day.\u201d<\/span>\u00a0<\/span><\/p>\n

Rare Disease Day is a patient-led international awareness campaign that highlights the challenges of the 300 million individuals impacted by rare diseases worldwide. In preparation for Rare Disease Day 2023, NORD is providing several opportunities to rally the community to raise awareness of the 7,000+ rare diseases that affect as much as ten percent of the population.<\/span>\u00a0<\/span><\/p>\n

Opportunities to get involved in Rare Disease Day include:<\/span>\u00a0<\/span><\/p>\n