lunes, 11 de febrero de 2019

Rare Disease Day ® 2019

Rare Disease Day ® 2019





About Rare Disease Day 2019 (28 February)

People around the world are joining the global movement for rare diseases by taking part in the #ShowYourRare campaign, holding events and raising awareness.

This year’s theme is ‘Bridging health and social care’. Rare Disease Day 2019 is an opportunity to be part of a global call on policy makers, healthcare professionals, and care services to better coordinate all aspects of care for rare disease patients and families.

A patient-led campaign, Rare Disease Day was launched by EURORDIS and its Council of National Alliances in 2008 and brings together millions of people in solidarity. EURORDIS leads the global community in organising Rare Disease Day, which takes place on the last day of February each year to raise awareness of the impact that rare diseases have on 30 million people in Europe and over 300 million people around the world.

Watch and share this year's official Rare Disease Day videos, including three new videos telling the stories of Filip from Romania who is living with achondroplasia, Karlo from Croatia who is living with neurofibromatosis type 1, and Lorena from Spain who is living with Phelan-McDermid syndrome.

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