Rare Disease Day 2016, "Patient Voice"

November 25, 2015   World

International Federation for Spina Bifida and Hydrocephalus | Source

Rare Disease logo Brussels—On the last day of February, usually the 28th, but in 2016 on February 29, a rare day in a leap year, the World Rare Disease Day takes place to raise awareness of rare diseases and to improve access to treatments and medical representation for individuals with rare diseases and their families.

The theme for the 9th annual World Rare Disease Day is “Patient Voice” to recognise the role that patients play in making their voices heard and in encouraging change that improves their lives.

The Rare Disease Day 2016 slogan ‘Join us in making the voice of rare diseases heard’ appeals to a wider audience, those that are not living with or directly affected by a rare disease, to join the rare disease community in making known the impact of rare diseases.

The day is coordinated by EURORDIS, whose mission is to be the voice of an estimated 30 million people living with a rare disease in Europe.