Over 80 countries ‘Join Together for Better Care’ on Rare Disease Day 2014

28 February 2014 is Rare Disease Day.  Across the globe, rare disease patient organisations and their partners will join forces to hold educational events and promote awareness of rare diseases and the millions of people who are affected by them.

This year, Rare Disease Day is putting the spotlight on care with the slogan ‘Join Together for Better Care’. There are many aspects to caring for people living with a rare disease. Some patients have access to medicines while others have no treatment available. Some patients are fairly independent while others require intensive physical assistance and equipment. Care can consist of special equipment, expert medical consultation, physical therapy, social services, medicines, respite for family members, and much more. For most children and adults living with a rare disease, primary care is provided by family members.

Over 6000 different rare diseases have been identified to date, affecting over 60 million people in Europe and the USA alone. Due to the low prevalence of each disease:

• medical expertise is rare
• knowledge is scarce
• care is inadequate
• research is limited
• patients can struggle to get a diagnosis, receive treatment and benefit from research

Rare Disease Day was launched by EURORDIS and its Council of National Alliances in 2008. Held on the last day of February each year.

Find out more about the campaign

Find out more about rare diseases