The Voice of Rare Disease
Patients in Europe
Launch of new website for Rare Disease Day 2016!
Rare Disease Day 2016 will take place on the 29 February 2016, a rare day in itself!
The main objective of the Day is to raise awareness of rare diseases and the impact they have on people’s lives.
Take a look at the new RareDiseaseDay.org website!
2016 marks the 9th edition of this patient-driven movement. Thousands of events will take place across all continents, reaching people living with a rare disease and their families around the world.
EURORDIS, together with a network of 37 national patient organisation partners, calls on patients, families, patient organisations, carers, healthcare professionals, decision makers, industry, researchers and anyone with an interest in rare diseases to help put rare diseases in the spotlight!
Rare Disease Day 2016 theme & slogan
The 2016 theme Patient Voice recognises the crucial role that patients play in voicing their needs and in instigating change that improves the lives of patients and their families.
The 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.
Get involved
- To mark the occasion of Rare Disease Day, EURORDIS and partners will hold a two day multi-stakeholder symposium on improving patient access to rare disease therapies in Brussels on 24 - 25 February, 2016. For registration and fee details please email anne-mary.bodin@eurordis.org.
- If you are unable to attend this event in person, the opening session, including keynote speakers such as Philippe de Backer, Member of European Parliament, Belgium, will be live streamed on eurordis.org (free access, specific link to be provided at a later stage). EU Commissioner for Health and Food Safety Vytenis Andriukaitis will also speak later in the day. A video of his speech will be available online shortly after the event on EURORDIS TV.
- The EURORDIS Awards 2016 ceremony will also be live streamed on eurordis.org (free access) from Brussels on 23 February from 17 – 18:30 GMT+1. Tune in to find out who wins the 2016 Awards!
There are many other ways you can get involved in Rare Disease Day 2016:
Become a friend of Rare Disease Day, raise and join hands, organise and post your own event, tell your rare disease story and stay tuned for news of the new ‘Big Moment’ social media campaign!
You can also download the new Rare Disease Day logo here.
This Rare Disease Day, Join us in making the voice of rare diseases heard. Together, we can amplify thePatient Voice so that it is heard all over the world!
Eva Bearryman, Junior Communications Manager, EURORDIS
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