February 28th 2011 will mark the fourth International Rare Disease Day coordinated by EURORDIS and organized with rare disease national alliances in 25 countries. On that day hundreds of patient organizations from more than 40 countries worldwide will be organizing awareness-raising activities and converging around the slogan:
“Rare but Equal”
While the average level of health in most parts of the world have continued to improve over the last decades and huge progress has been made in scientific research and medical technology, health gaps amongst countries and within countries are widening, especially for the most vulnerable groups in society.
What about people living with rare diseases?
Every rare disease patient has his story of injustice to tell. For some of them it will be about obtaining life-saving treatments or being reimbursed, or about gaining access to specialized services or being considered eligible for disability compensation. Others have more difficulties finding a job, getting into school, obtaining a loan or accessing lifetime insurance.
From my point of view to define certain diseases as rare is not fully correct, as any patient suffers from a disease, no matter is it rare or widespread. That is a different perspective of seeing the problem. Defining some diseases as “rare” seems irrational, because namely those pathologies need more attention from both doctors and authorities all over the world.
We appreciate the slogan used in American Rare Disease Day campaign :
Alone we are Rare. Together we are Strong.
Respiratory Decade is proud to be a partner of International Rare Disease Day.
Together we are for:
• Equal access for rare disease patients to health care and social services
• Equal access to basic social rights: health, education, employment, housing
• Equal access to orphan drugs and treatmentsSomebody can say that these diseases are invisible, but one can only presume the real number of patients with these “rare” pathologies. Being rare a disease never stops to be a disease, with its symptoms and consequences.