Participate in Rare Disease Day 2014 and Join together for better care!
Rare Disease Day 2014 puts the spotlight on “Care”. To bring attention to the many aspects of care for people living with a rare disease, the official Rare Disease Day 2014 slogan urges participants around the world to Join together for better care.
Rare disease care can mean different things to different people. Expert medical consultation, physical therapy, medicines, products and devices, diagnostics, social services, and respite for family members are just some of the kinds of care people living with a rare disease may need. Some people living with a rare disease are independent while others require intensive physical assistance and equipment. For most children and adults living with a rare disease, primary care is provided by family members.
Held the last day of February, each year Rare Disease Day raises awareness for the issues that the rare disease community faces. The 2014 theme of Care draws attention to the many different facets of rare disease care, which taken collectively, represent a universal need for patients and their families around the world.
Created and coordinated by EURORDIS and organised with rare disease National Alliances around the world, the Rare Disease Day campaign seeks to raise awareness both amongst the general public as well as policy makers, public authorities, industry representatives, researchers, health professionals and everyone with an interest in rare diseases. Participation has grown significantly each year since the first Rare Disease Day was held in 2008. Last year, hundreds of patient organisations in more than 70 different countries and regions worldwide got involved (learn more).
28 February 2014 will mark the seventh Rare Disease Day and preparations are already starting to get underway in many areas. The rarediseaseday.org website for 2014 will launch soon, with all the information you need to create an event or find something happening where you live. To find out more, write to rarediseaseday@eurordis.org.
Patients, families, researchers, healthcare professionals and all members of the rare disease community, including you, are encouraged to Join Together for Better Care!
See highlights from past editions of Rare Disease Day
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Louise Taylor, Communications and Development Writer, EURORDIS