Česká aliance pro kardiovaskulární onemocnění (Czech Alliance for Cardiovascular disease)
Familial Electrical Diseases
- Long QT syndrome
- Short QT syndrome
- Brugada syndrome
- Catecholaminergic polymorphic ventricular tachycardia
- Idiopathic ventricular fibrillation
Familial Cardiomyopathies
- Arrhythmogenic cardiomyopathy
- Dilated cardiomyopathy
- Hypertrophic cardiomyopathy
- Restrictive cardiomyopathy
- Non-compaction cardiomyopathy
Congenital Heart Diseases
- tricuspid atresia
- pulmonary stenosis
- pulmonary atresia
- aortic and mitral valves
- VSD
- Fallot
- univentricular heart
- others
Other Rare Cardiac Diseases
- Sarcoidosis
- Amyloidosis
- Myocarditis
- Pericarditis
- rare tumors
- other rare cardiac diseases
- Aims of the Organization
We are a cardiac patient organization that advocates for the interests and needs of patients with cardiovascular disease or the risk factors that can cause it. We focus on patient advocacy and dealing with regulatory authorities, educating patients and their families, communicating with professionals, and dedicated to the primary prevention of CVD. Our areas of interest are dyslipidemias, including familial and rare, chronic heart failure and hereditary diseases in adulthood (cardiomyopathies, arrhythmic syndromes, aortic syndromes and some congenital defects). Our organization is an alliance, and other patient associations and organizations, self-help groups, etc. can become members. We are members of the Czech Association for Rare Diseases (CAVO), the international FH Europe Foundation (FHEF) and the European Heart network (EHN).
- Activities of the Organization
Education: publishing brochures and other materials for patients and the public, awareness-raising events for Rare Disease Day, World FH Day and World Heart Day, seminars and one-day conferences for patients, lecture activities for spa facilities, podcasts, videos, press conferences, websites and social networks (Facebook, Instagram, LinkedIn).
Patient advocacy: negotiations with regulators and insurance companies on drug availability, participation in roundtables, involvement in the Patient Council of the Ministry of Health, participation in pilot screening projects and implementation of screening in cardiology, co-creation of the National Cardiovascular Plan of the Czech Republic for 2023-2033. International activities – networking, EU Parliament and EU Council activities. - Contact address of organization
info@ca-ko.cz