Stacie & Ash Holder
Rare Disease Day takes place on the last day of February each year.The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.
Building awareness of rare diseases is so important because 1 in 20 people will live with a rare disease at some point in their life. Despite this, there is no cure for the majority of rare diseases and many go undiagnosed. Rare Disease Day improves knowledge amongst the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living with rare diseases.
The National Organization for Rare Disorders (NORD) offers a Rare Disease Database as well as free webinars, fact sheets, infographics and other helpful materials for patients and caregivers. They also offer Patient Assistance Programs that help patients obtain life-saving or life-sustaining medication. I do not represent Rare Disease Day or the National Organization for Rare Disorders but their websites are https://www.rarediseaseday.org/ and https://rarediseases.org/
