martes, 30 de enero de 2018

News: Official Rare Disease Day 2018 video out now!


Out now - Rare Disease Day 2018 video!

Show Your Rare, Show You Care

29 January 2018, Paris - The officialRare Disease Day 2018 video launches today and is already available in 24 languages, kicking off the international patient-led movement that puts rare diseases in the spotlight.
The video features patients and family members, researchers and doctors who show their rareJoin them and show your support for the rare disease community - #ShowYourRareduring the month of February on social media.
Read stories of the stars of the video - 5-year-old Enzo, who is living with congenital myasthenic syndrome, Yara, a rare disease researcher, Annie, who is living with leber hereditary optic neuropathy, and Alexandre, who is living with fibrodysplasia ossificans progressiva.
Get involved in Rare Disease Day 2018
Everyone can get involved in Rare Disease Day, those affected and unaffected by rare diseases alike!

Patients as proactive actors in research

Rare Disease Day 2018 (28 February) focuses on this year’s theme - research. This year’s video pays tribute to the role patients play in research. The patient community needs researchers. They discover diseases and develop treatments and cures. But researchers also need patients and reply upon their participation to ensure research is meaningful.Patients are not only subjects but also proactive actors in research.

There has been great progress in rare disease research, in part thanks to the advocacy work of the rare disease patient community. However, the fact remains that there are over 6000 rare diseases, an estimated 30 million people living with a rare disease in Europe and 300 million worldwide, but no cures and few treatments available for the majority of these diseases. To help change this, patient involvement in research needs to be taken to the next level.

Rare Disease Day 2018 offers participants the opportunity to be part of a global call on policy makers, researchers, companies and healthcare professionals to increasingly and more effectively involve patients in rare disease research.

About Rare Disease Day

Over the last 10 years, Rare Disease Day has become iconic as the global campaign for raising awareness of rare diseases. Rare Disease Day is a patient-led campaign launched by EURORDIS-Rare Diseases Europe and its Council of National Alliances in 2008. Held on the last day of February each year, it seeks to raise awareness of the impact that rare diseases have on the lives of patients and those who care for them. Rare Disease Day brings together millions of patients, families, carers, medical professionals, policy makers and members of the public in solidarity.

Since Rare Disease Day began, thousands of events have been held throughout the world, reaching hundreds of thousands of people. In 2018, organisations in over 90 countries and regions around the world are participating in Rare Disease Day by holding local events. For the first time ever, Togo and Ghana will participate in Rare Disease Day.
Press contact
Eva Bearryman,
Communications Manager

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