Cardiogen patient organisation Romania
Cardiogen Patient Association is an organization that has the purpose to represent and protect the interest of patients with cardiac genetic diseases and support in having better life quality, as following:
- Acces to investigations, tests, and treatments that are specific to their disease;
- Promoting and organizing of events to inform the large public about the symptoms and specific treatments for cardiac genetic diseases;
- Contact and keep in touch with similar organization across Europe, with the purpose of having access to the potential, experience and scientific and social resources to be valued in the patient interest;
- Creating a platform in which the patients can communicate their experiences, and support to each other;
- A platform where problems can be brought into doctors attention, and suggestions can be given
The diseases we want to represent are : hypertrophic cardiomyopathy, dilated cardiomyopathy, Arrhythmogenic cardiomyopathy, Left ventricular noncompaction, restrictive cardiomyopathy, Brugada syndrome, long QT syndrome.
For more information: asociatia-cardiogen.ro
My name is Radu BALAN , Romanian, married, currently living in Sibiu, 34 years old.
I have a bachelor degree in engineering forestry, and I have 10 year experience as a branch office manager in a company that produces roofs and industrial halls.
I’ve been diagnosed with non-obstructive HCM by chance, since I didn’t had any symptoms. Further investigations that I have accessed, showed that I have an inherited genetic heart disease, with MYBPC3 gene mutation.
Since in Romania there is no association for patients with genetic heart diseases, we accepted our doctor suggestions to start this project that will be a big help for lots of patients that have genetic heart diseases.
We just took our first steps in doing so, therefore we will need guidance in cooperating and bringing the best results for our members, so it’s a necessary and useful challenge that we look forward in accomplishing it.