Rare But Strong Together!

We want to build a better world for patients with rare diseases!  “Solidarity” is this year’s theme stressing the importance and need for collaboration as well as mutual support in the field of rare diseases.February 29, 2012 marks the fifth international Rare Disease Day. On this day hundreds of patient organizations from more than 50 countries worldwide are organizing awareness-raising activities converging around the slogan “Rare but strong together”.

Rare diseases are life-threatening or chronically debilitating illnesses. Due to the low prevalence of each disease, medical experts are rare, knowledge is scarce, care offering inadequate, and research is limited. Very few cures exist. While the diseases are rare, collectively they affect more than 60 million people in the U.S. and Europe alone. Despite their great overall number, rare disease patients are the orphans of health systems which are often denied diagnosis, treatment and the benefits of research.

The cooperative efforts will help patients in areas such as:

  • Access to correct diagnosis (Genetic testing, newborn screening)
  • Increase availability of information (Coding and classification, telemedicine)
  • Improve scientific knowledge (Registries and databases, international research platforms, multi-centered clinical research, development of drugs and diagnostic tests, training of professionals)
  • Mitigate social consequences (Specialized social services that would improve the quality of life of people living with a rare disease and their families, such as Help Lines, Respite Care Services and Therapeutic Recreation Programs)
  • Increase provision of appropriate quality healthcare (International reference networks of centers of expertise, multidisciplinary care)
  • Improve access to the few existing drugs and care (Pricing and reimbursement, healthcare reform)
  • Eliminate isolation (Patients and families support and empowerment, networking and community building)

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