News from the ToughHearts Conference
Friday July 25th 2014
We wish you a hearty goodbye and want to thank you for all the moments we have shared together... laughter and tears... we had it all!
It was great having you here in Switzerland at our ToughHearts Conference!
We love you all, tough hearts from all over the world!!!
Please give us a frank feedback and comment on our conference. Return your comments to Grace at This email address is being protected from spambots. You need JavaScript enabled to view it. Thank you a lot.
Thursday July 24th 2014
Our last day of conference was just amazing. With us, we had our public guests - family, friends, association members and more. In the morning, PD Dr. Matthias Greutmann and Dr. Theresa Seeliger had a speech about what they love and hate about being a GUCH doctor, a topic that perfectly matched to the conference theme and to the hearty tables of Wednesday. It was interesting to hear how they experience relationship with us and how working with GUCH can be challenging, frustrating and enriching in the same time.
Afterwards, Christina Fasser, Vice-President of ProRaris, the Alliance for rare diseases, spoke about "The Challenge in our health care system" and how important it is to turn patients into partners.
In the afternoon we heard the report of our European Congenital Heart Group (ECHG) of 2012-2014. There were a lot of outcomes and aims reached, and new members were named. But the best news was that we could fix the conference hosting countries for 2016, 2018, 2020 and 2022!
Finally, we had a fantastic gala dinner with live music. The Swiss band "elven" performed the "tough heart" song for us and we all sang along. It was magic when Karen-Marie played the piano and Minas the bongo drums. We danced and partied as if we hadn't tough hearts!
It was the perfect ending of a wonderful conference!
Hearty News 4
Wednesday July 23rd 2014
This morning, we were literally "tough" when we spoke in small conversation groups about what we love and hate about being a GUCH. This included conversations about emotional distress, pain, suffering and living with restrictions.
Dr. Noémi De Stroutz spoke afterwards about psychosocial reasearch concerning GUCH in her speech with the accurate title: "Hurray, we are still alive!".
In the afternoon, the delegates had the choice between the following group activities: Discovering Lucerne on a "fox trail" or on their own, and a creative workshop with the GUCH-artist Rinaldo Collenberg.
Tuesday July 22nd 2014
Today, we visited Edwards Lifesciences, a global leader in the science of heart valves and hemodynamic monitoring. It started with a informative speech on "Heart Valves Defects" held by Prof. Dr. Christine Attenhofer. It was particularily impressive and amazing to see the making of heart valves as every single valve is handmade. After a nice lunch in Hergiswil that was sponsored by Edwards Lifesciences, the delegates could visit the Glasi Hergiswil, a traditional glassblower factory. Once back at the venue, we had the pleasure to listen to the speech by Amy Verstappen, former president of the US GUCH-association ACHA on "Lost GUCH patients".
Please find more information on heart valves on this informative website of Edwards Lifesciences.
Monday July 21st 2014
The ToughHearts Conference 2014 has officially started today.
We enjoyed a wonderful and interesting opening of our conference. The highlights included the opening address held by our beloved GUCH-doctor Prof. Dr. Erwin Oechslin, the touching speech of Peter Nieuwendijk, the presentation of CUORE MATTO by our much loved Noémi, the amusing speech held by Prof. Dr. Thierry Carrel and the emotional and enriching Round Table with GUCH-doctors from all GUCH-centers in Switzerland, namely Prof. Dr. Andreas Hoffmann, Prof. Dr. Joëlle Günthard, both from Basel, PD Dr. Matthias Greutmann from Zurich, Dr. Dominik Stambach from St. Gallen and Dr. Kerstin Wustmann from Bern. It was great to feel that the discussion topic „Learning from each other“ touched a lot of you and that you contributed on a deep level to the discussion with the doctors. Thank you all for that!
We also listened to the "Tough Heart" song especially written for us and our conference by elven.
Please find here our Conference Newsletter called "Hearty News":
Hearty News 1
ToughHearts Conference
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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