Rare diseases are chronic, progressive, debilitating, disabling, severe and often life-threatening. Information is scarce and research is insufficient. People affected face challenges such as diagnosis delay, misdiagnosis, psychological burden and lack of practical support. Many rare disease patients are denied their right to the highest attainable standard of health and continue to advocate their need to overcome common obstacles.
The main objective of Rare Disease Day 2009 is to raise awareness with policy makers and the public of rare diseases and of their impact on patients’ lives.
Thus the aim of the day is to reinforce their importance as:
1. A Public Health Priority
2. A Need for Centres of Expertise
Other main objectives of Rare Disease Day are to:
- Raise awareness on rare diseases
- Strengthen one voice of patients
- Give hope and information to patients
- Bring stakeholders closer together
- Coordinate policy actions in different countries
- Inspire continued growth of the awareness of rare diseases
- Get equity in access to care and treatment
Awareness raising events will take place in each participating country. To find out what is happening in your country, click here.