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Rare Disease Day

February 28

The United Kingdom has engaged in Rare Disease Day since its beginning in 2008. Taking a political approach, many patient organisations have held receptions and debates focused on rare disease policy in local and national parliaments. In 2016, furthering the important advocacy work done for rare diseases in the UK, Rare Disease UK held receptions in the Scottish and Westminster parliaments to launch a report from the UK Rare Disease Forum, the group charged with overseeing the implementation of the UK Strategy for Rare Diseases. Guests and speakers included influential policy makers and people living with a rare disease. Other events included  a photography exhibition and a sponsored Kilimanjaro climb which all raised awareness for rare diseases.

You can also get involved! Do you know of any events not listed here? Email us at rarediseaseday@eurordis.org.