Dr. Noémi de Stoutz, MD/specialist palliative care, born with a congenital heart defect, board member of CUORE MATTO
Dr. de Stoutz was born in Zurich, Switzerland in 1958 with a VSD but no pulmonary artery, a condition that could not be operated at that time. She grew up against all odds to become a physician, specialised in oncology and palliative care. She worked part time in various inpatient and home care hospices, including as medical director, was vicepresident of the Swiss Association for Palliative Care for 10 years, and served as an expert in national and EU projects. As a board member of CUORE MATTO and honorary member of the Swiss Cardiology Association, she is responsible for member contacts and is lecturing about GUCH issues.
We are GUCHs, Grown-Ups with Congenital Heart defects. In 1999, we set up our own association in Switzerland, CUORE MATTO, which regularly organises meetings, lectures and seminars for its members who are all affected by a congenital heart defect.
At present, we have the great pleasure to be host of the EuroHearts Conference in Switzerland, the Tough Hearts Conference 2014 which started on July 20th 2014 and ended on Friday 25th 2014.
The Tough Hearts Conference 2014 takes place in Baar in the canton of Zug / Switzerland, and welcomes delegates from many different GUCH-organisations from Europe and around the world.
The Conference Programme includes interesting and informative lectures and round tables of GUCH-specialists and cardiologists, instructive workshops and exciting leisure activities. Being together with GUCHs from so many different places and backgrounds is essential and enriching for all of us.
Beside very concrete medical advice and news concerning GUCH-issues, the Tough Hearts Conference 2014 focuses on the dealing with constraints and sacrifice and the living with pain and emotional distress, all subjects which characterise a life with a congenital defect or disease. The importance of the doctor-patient-relationship and the fact that they learn from each other is also highlighted during this conference.
In addition, the Tough Hearts Conference 2014 is a jubilee conference as it is 20 years since it has taken place for the first time and 10 years for the last time in Switzerland.
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