Ester Costafreda

Ester Costafreda

In 2014 my son Angel died of sudden death when he was 15 years old without having had any symptom before. He died of Arrythmogenic Cardiomyopathy. In 2017 I was one of the founders of SAMS and began to collaborate with the association. After 5 years being involved with SAMS and once we developed our cardioprotected schools programme I decided to leave my previous job as Purchase Manager after 18 years because I wanted to dedicate all my time and efforts to SAMS to help the association grow and give support to all patients and families affected with inherited cardiac diseases.

Role in SAMS

Chair and board member

Role(s) in the European Patient Advocacy Group

Currently Co-Chair
Chair from 2018 to 2019

Goal to achieve by being an ePAG

I was involved in the ERN Epag since its creation in August 2017 together with 4 European patient associations. One of the main goals was to increase the number of associations of patients in our Epag to be able to represent and give voice to as many patients in Europe with rare cardiac diseases. After 3 years we already had 10 associations of patients from 10 different countries in Europe in our group.

The main goal of our Epag is to defend patient interests and represent the voice of the patients in all the activities taking place in the ERN. We are part of the working groups of the different projects going on together with the expert clinicians from the committee.

To increase people awareness on arrhythmogenic cardiomyopathy I began to work in a very motivating project where patients with this disease from different countries in Europe would share their testimonials about diagnosis, living with the disease, medication, sports and relationship with their entourage after being diagnosed. The project is on progress and should come to an end very soon.