Logo for rare disease Day
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).
Patients, families, researchers, healthcare professionals and all members of the rare disease community, including you, are encouraged to Join Together for Better Care!
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If you had exactly 45 days to live due to some rare disease but....?
you would have no pain or disability in that time......and an anonymous person gave you $30,000. How would you spend your last 45 days on earth?
I would live like I was dying. I would say good bye to everyone I know. I would find a lover and love stronger and deeper. I would explore places I had wanted to explore. I would right old wrongs I might have done. I would take the time to cleanse my soul and prepare for the end. I would listen to music unheard and read books I left unread.