page_title: Rare Disease Day
hierarchical_section_title: Rare Disease Day
caption_attribution_description: English: Sandy Macrae, M.B., Ch.B., Ph.D., President and CEO, Sangamo Therapeutics speaks at Rare Disease Day at NIH 2018. Credit: Daniel Soñé Photography, LLC
context_page_description: Rare Disease Day is an observance held on the last day of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families. The European Organisation for Rare Diseases established the day in 2008 to raise awareness for unknown or overlooked illnesses. According to that organization, treatment for many rare diseases is insufficient, as are the social networks to support individuals with rare diseases and their families; furthermore, while there were already numerous days dedicated to sufferers of individual diseases, there had previously not been a day for representing sufferers of rare diseases. In 2009 Rare Disease Day went global as the National Organization for Rare Disorders mobilized 200 rare disease patient advocacy organizations in the United States while organizations in China, Australia, Taiwan, and Latin America also lead efforts in their respective countries to coordinate activities and promote the day.
context_section_description: Rare Disease Day is an observance held on the last day of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families. The European Organisation for Rare Diseases established the day in 2008 to raise awareness for unknown or overlooked illnesses. According to that organization, treatment for many rare diseases is insufficient, as are the social networks to support individuals with rare diseases and their families; furthermore, while there were already numerous days dedicated to sufferers of individual diseases (such as AIDS, cancer, etc.), there had previously not been a day for representing sufferers of rare diseases. In 2009 Rare Disease Day went global as the National Organization for Rare Disorders mobilized 200 rare disease patient advocacy organizations in the United States while organizations in China, Australia, Taiwan, and Latin America also lead efforts in their respective countries to coordinate activities and promote the day.
caption: A Rare Disease Day event in 2018
exif: {"Image ImageDescription": "The National Center for Advancing Translational Sciences (NCATS) hosted it's annual Rare Disease Day at NIH in Masur Auditorium. One of the keynote speakers was Congressman Leonard Lance (R-NJ), the House Co-Chair of the Rare Disease Congressional Caucus.", "Image XResolution": "300", "Image YResolution": "300", "Image ResolutionUnit": "Pixels/Inch", "Image Software": "Adobe Photoshop Lightroom 5.7 (Macintosh)", "Image DateTime": "2018:03:04 15:35:56", "Image Artist": "Daniel So\u00f1\u00e9", "Image Copyright": "2018 Daniel Sone. All rights reserved.", "Image ExifOffset": "510", "Thumbnail Compression": "JPEG (old-style)", "Thumbnail XResolution": "72", "Thumbnail YResolution": "72", "Thumbnail ResolutionUnit": "Pixels/Inch", "Thumbnail JPEGInterchangeFormat": "710", "Thumbnail JPEGInterchangeFormatLength": "11087", "EXIF ExifVersion": "0230", "EXIF DateTimeOriginal": "2018:03:01 10:08:55", "EXIF DateTimeDigitized": "2018:03:01 10:08:55", "EXIF SubSecTimeOriginal": "85", "EXIF SubSecTimeDigitized": "85"}