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Rare Disease Day 2019 is approaching! Show your rare. Show you care.

28 February 2019 will be the eleventh international Rare Disease Day coordinated by EURORDIS

February 28, 2019

Rare Disease Day events are being organised by hundreds of patient organisations all over the world who work on a local and national level to raise awareness for the rare disease community in their countries. Information on the events organised this year are available via the Rare Disease Day website and can be searched by country.

Moreover, linked to Rare Disease Day, special meetings are planned in order to brainstorm and foster collaboration between various stakeholders, organisations and institutions at the international scale. EURORDIS organises its 3rd Multi-Stakeholder Symposium on Improving Patients’ Access to Rare Disease Therapies on 13 and 14 February in Brussels. The goal of this event is to gather patient advocates, policy makers, payers, Health Technology Assessment bodies, clinicians and industry executives and discuss how to improve patients’ access to rare disease medicines. Another striking event is the Second High-Level Event of the NGO Committee for Rare Diseases at the United Nations on 21 February. This event brings together 100 participants from the international NGO community, UN agencies, national governments, academic and research institutions, including Orphanet, and the private sector sharing the common objective of collaboration for the advancement of rare diseases as a global public health priority.

In addition to the events planned this year, EURORDIS, the organiser of the day, has launched a social media awareness raising campaign. People across the world are encouraged to paint their faces and then post an image or selfie on any social media channel and include the hashtags: #ShowYourRare and #RareDiseaseDay during the whole month of February 2019. These photos will echo the official video for the day.    

 

The National Organisation for Rare Disorders (USA) has chosen “Show your stripes” as their rallying cry, calling for people to wear stripes on the 28 February.

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