About Rare Diseases Czech Republic (Ceska ascociace pro vzacna onemocneni)
What is the Rare Diseases Czech Republic mission?
The Rare Diseases Czech Republic (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. Currently we have 30 members – patient organizations and 50 individual members with ultra rare diseases.
One of our main goals is to improve care in Centres of Expertise for RD in the Czech Republic, the other is to change legislation in favor of people with RD.
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