What is the Czech Association for Rare Diseases mission?
The Czech Association for Rare Diseases (ČAVO) was founded in March 2012.
ČAVO's mission is to bring together the organizations serving people with rare diseases as well as individuals, to represent their interests and to strengthen awareness of rare disease issues among experts in health care, leaders of state and international institutions and the public.
What is a rare disease?
A disease is defined as rare if it affects less than 5 people out of 10,000, (i.e. less than 1 patient out of 2,000). We currently know of more than 8,000 various rare diseases.
What are the major issues affecting people with rare diseases?
- Late or incorrect diagnosis
- Inaccessible expert health care
- Inaccessibility of so-called orphan drugs (i.e. drugs for rare diseases)
- Failures in the social support and benefits network due to lack of knowledge on the part of assessing doctors, social workers, etc.
- People with similar diseases who lack patient organizations have limited possibilities to share experiences