Síndromes Arrítmicos relacionados con la Muerte Súbita (SAMS)
Síndromes Arrítmicos relacionados con la Muerte Súbita (SAMS) association is a recently established Spanish patient association to fight against arrhythmic syndromes related with sudden death. The SAMS association has four main goals:
The first goal is to increase general public awareness and improve early detection of sudden death as an attempt to decrease its incidence. One of the most important actions of the SAMS association is to support Georgia Sarquella-Brugada (paediatric cardiologist in Sant Joan de Déu – Barcelona’s Children Hospital and leader of the thematic area “Special Electrophysiology Conditions in Children”) in the organization of the SAMS conferences every two years. Last edition of the conference, held in March 2017 in Sant Joan de Déu Hospital, had more than 500 attendees. During this conference prestigious cardiologists and other doctors provide informative lectures about heart diseases and progresses in the field of cardiology. There are also workshops for children and families and an emotional afternoon where patients and their families can share their experiences with the attendees. At the last edition of the conference, cofounders of the SAMS association had the opportunity to present the newly established association to give support to all patients and their families. Currently, the association is developing a special workshop for schools based on the belief that children can be the best ambassadors of the SAMS association. The aim is to make a synergy between health and nutrition.
The second goal is to improve the quality of life of patients and their families by providing psychological support and developing the expert patient figure since it is more convenient to communicate with someone of your own age when you suffer a shocking experience in your life and share with him/her emotions, worries and important decisions.
The third goal of the SAMS association is to make the transition between the paediatric hospital and the adult hospital smoother by increasing the age when a teenager has to move to an adult hospital to at least 21 years and by creating a special area dedicated to children in cities where there are only adult hospitals.
The fourth goal is to obtain funds for scientific research in rare heart diseases.
Being part of the Patient Advocacy Board of ERN GUARD-Heart is a good opportunity for the SAMS association to share specific activities and projects with other patient associations in Europe, to represent the voice of Spanish patients with rare cardiac diseases, and to create a bridge between the Network and the patient community to facilitate access to high quality diagnosis, care and treatment.
For more information about SAMS, please visit the website.
Ester Costafreda, SAMS cofounder member in charge of International Relations and Co-Chair of the ERN GUARD-Heart Patient Advocacy Board
Photos of the SAMS Conference March 2017