Rare Disease Day

Rare Disease Day takes place worldwide, typically on or near the last day of February each year, to raise awareness among policymakers and the public about rare diseases and their impact on patients’ lives. Each year, NCATS and the NIH Clinical Center sponsor Rare Disease Day at NIH as part of this global observance.

The History of Rare Disease day was founded by the European Organization for Rare Diseases, the first Rare Disease Day was celebrated in 2008 on February 29. A “rare” date that happens only once every four years. Since then, Rare Disease Day has taken place on the last day of February, a month known for having a rare number of days. The day is held to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families. Treatment for many rare diseases is insufficient, as are the social networks to support individuals with rare diseases and their families.

Individuals observing Rare Disease Day take part in walks and press conferences, organize fundraisers, write a message to government representatives, along with holding events, gatherings, and campaigns. The days leading up to Rare Disease Day include policy-related events in numerous locations, where policy makers meet with individuals with rare diseases to discuss issues such as equal access and availability of prevention, diagnosis, treatment and rehabilitation.

Each year since its beginning there have been thousands of events stemming from races and walks to art exhibits and workshops. These events are held to bring attention to policy makers and inspire change in the community. Historical monuments such as the Colosseum and the Empire State building have taken steps in sending messages of solidarity on this day by lighting up with the iconic pink, blue, and green colors, providing hope for millions world-wide.

Some important facts about rare diseases, 1 in 10 people suffer from rare diseases in the U.S., 50% of those affected by rare diseases are children, Rare diseases affect over 300 million people worldwide, 95% of rare diseases lack an FDA approved treatment.

The Blue Denim Genes Ribbon is a symbol of hope for more than 7,000 small, rare disease communities around the world. Wear your denim ribbon to show your support on World Rare Disease Day.

Please do your part in helping spread awareness of Rare Diseases

#RareDiseaseDay #awareness #healthcare #skillednursing #erezbaver

http://www.erezbaver.com

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