Noteworthy - Genetics Home Reference - NIH

Noteworthy - Genetics Home Reference - NIH

 Rare Disease Day 2019

The annual Rare Disease Day will be observed on February 28, 2019.

Rare Disease Day was established as a day to bring awareness to rare diseases, which in the United States are defined as conditions that affect fewer than 200,000 people. Currently, a total of about 30 million Americans are affected by over 6,000 rare diseases.

Patient advocacy organizations in the United States and around the world observe Rare Disease Day as an opportunity to bring recognition to rare diseases and to the people affected by them. The rarity of these diseases can make it difficult for affected individuals to receive an accurate diagnosis and proper care. The theme of Rare Disease Day 2019 is "bridging health and social care." As management of a rare disorder can involve multiple medical specialists, it is important for different health services to deliver care efficiently through coordinated support. Rare Disease Day 2019 recognizes the importance of the partnership between the healthcare and patient communities in managing rare diseases.

• Rare Disease Day USA (National Organization for Rare Disorders)
• Rare Disease Day International
• Rare Disease Day at NIH (National Center for Advancing Translational Sciences)
• World Rare Disease Day (Global Genes)
• Genetic and Rare Disease Information Center (GARD) (National Center for Advancing Translational Sciences)
• National Organization for Rare Disorders (NORD)
• RareConnect
• Rare Diseases Are Not Rare! Challenge Offers New Tools to Raise Awareness (National Center for Advancing Translational Sciences)