European Congenital Heart Disease Organization
Budget
€9,281
EP Access
0
accredited persons
Staff
7
4.6 FTE
EU Grants
None
Mission & Goals
Improve the treatment and quality of life of patients with Congenital Heart Disease (CHD) by information on appropriate medical, surgical and psychosocial therapies, in particular regarding long-term outcomes and unifying statistical methodology; Integrate paediatric and adult cardiac treatment, and in particular to install and provide a smooth “transition” for adolescents from paediatric to adult; Promote and sustain scientific and medical research in all fields of CHD; Represent the interests of CHD patients in national and European health policy; Raise public awareness of CHD and to instill in the public an understanding of the concerns of people with CHD; improve the safety of treatments for children and adults; Advocate European regulations for off-label use and special treatment needs (i.e., paediatric).
EU Legislative Interests
European Congenital Heart disease organisation is committed to bringing the patient perspective to policy initiatives and working to raise awareness of heart disease (e.g. European Health Union and the EU's activities in relation to non-communicable diseases).Provide up-to-date information about CHD to patients and their families; Lobby for European standards on medical and psychosocial care of CHD patients, including access to safe medicines; Share information about research studies and patients’ experiences within Europe.
Communication Activities
To learn more about our campaigns, please click here https://echdo.eu/meetings and also on our social media, facebook and Instagramhttps://www.facebook.com/EchdoHeart/
Interests Represented
Does not represent commercial interests
Member Of
EPF- European patient forum GLOBAL ARCH -Global Alliance for Rheumatic and Congenital Hearts
Organisation Members
Croatia Cyprus Estonia Finland France Germany Greece Iceland Ireland Italy Luxembourg Malta Netherlands Norway Romania Slovenia Spain Sweden Switzerland United Kingdom
Commissioner Meetings
No recorded meetings with EU commissioners.