Rare Disease Day is an awareness campaign that takes place on the last day of February each year. This years’ focuses is on care and encourages everyone in the rare disease community to ‘Join Together for Better Care’.
The theme for the 28th February 2014 2014 highlights that the many different facets of rare disease care represents a universal need for patients and their families around the world. Advocating at the local and national level to improve the lives of people living with a rare disease and their families is necessary, in order to break isolation through a vast, united international network of solidarity.
- The Rare Disease Day was launched in 2008 by EURORDIS and its Council of National Alliances.
- Rare Disease Day was started by patient organisations and is patient-led. Therefore, the primary drivers and beneficiaries of the international campaign are patients.
- Over 1000 events have taken place worldwide.
- The Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.
- The political momentum resulting from Rare Disease Day has also served for advocacy purposes. It has notably contributed to the advancement of national plans and policies for rare diseases in a number of countries.
- Many countries have National Alliances for their rare disease patient organisations and these alliances coordinate activities at the national level. The list of National Alliances can be found on the rarediseaseday.org website.
- 2014 Theme: Care & Slogan: Join Together for Better Care
The campaign started as a European event, it has progressively become a world event, with the USA joining in 2009 and patient organisations in over 70 countries or regions participating in 2013. Spain declared 2013 as the National Year for Rare Diseases.
Caring for people living with a rare disease has many facets. 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 medicines, products and devices, expert medical consultation, physical therapy, social services, respite for family members, and much more. For most children and adults living with a rare disease, primary care is provided by family members.
Patients and their families who feel isolated by the rarity of their disease should know that there are more than 6000 different rare diseases affecting over 60 million people across Europe and North America alone and several millions more throughout the world. Most of these diseases are genetic, serious, chronic and debilitating. Each disease is different, but they affect people in similar ways. Joining together can help patients and their families find common solutions for care and remind them they are not alone.
Healthcare professionals, researchers, pharmaceutical companies, and policy makers also frequently feel isolated in their struggle to find and provide care for rare diseases. Experience shows that bringing together scattered knowledge and resources for people living with rare diseases is the most efficient and effective way to mobilise the care patients and families need and deserve.
In Europe, there are several areas in which access to rare disease care is advancing:
- Shaping policies to improve access to medicinal products for rare diseases
- Identifying and improving access to specialised social services for rare diseases
- Centres of Expertise and European Network References
- National rare disease plans for countries in the European Union … and beyond
On rarediseaseday.org you can find information about the thousands of events happening around the world to build awareness for people living with a rare disease and their families.
*The Rare Disease Day logo is a non-commercial symbol of global partnership in the search for ways of improving the lives of those affected by rare diseases. Information taken from the Rare Disease 2014 Information Pack by EURORDIS October 2013.
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All the Best,