Wednesday, February 29, 2012

5th international Rare Disease Day -- "Rare but stronger together"

Today, February 29, marks the fifth international Rare Disease Day coordinated by EURORDIS and organized with rare disease national alliances in 25 European countries.

On this day hundreds of patient organizations from more than 40 countries worldwide are organizing awareness-raising activities converging around the slogan “Rare but strong together”

Activities will take place across Europe, all the way to Russia, continuing to China and Japan, in the US and Canada, and as far as Australia and New Zealand!

Watch the compelling video of "Solidarity" at

I've been involved with people active in the field of rare diseases for many years, through my work in healthcare marketing communications.  These people are not alone and need not act alone in order to meet their objectives. Although few and far between, collectively they are many and by acting together will be stronger.

Since patients are rare, expertise is scarce and people living with rare diseases face similar challenges, so acting together makes sense.

Rare disease patients all over the world face the same types of challenges:
  • Access to correct diagnosis
  • Lack of information
  • Overall lack of scientific knowledge
  • Social consequences
  • Lack of appropriate quality health-care
  • High cost of the few existing drugs and care
  • Inequities in availability of treatment and care
  • Isolation
“Rare diseases is an area where collaboration is essential”

The following are areas where it makes sense to join efforts:
  • 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)
Given the rarity of both patients and experts, most actions related to rare diseases have to be performed in cooperation between different countries, regions and levels. Progress for the benefit of rare diseases patients can only be achieved through close international cooperation.

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