Representative: Ester Costafreda

Disease(s) Covered:

• Familial Electrical Diseases
  • Long QT syndrome
  • Short QT syndrome
  • Brugada syndrome
  • Catecholaminergic polymorphic ventricular tachycardia
• Familial Cardiomyopathies
  • Arrhythmogenic cardiomyopathy
  • Dilated cardiomyopathy
  • Hypertrophic cardiomyopathy
  • Restrictive cardiomyopathy
• Other
  • Sudden cardiac death
  • Grief support

 

Aims of the Organization

Our mission is to improve the quality of life of patients with arrhythmic syndromes related to sudden death and their families as well as decreasing the effects of these inherited cardiac diseases, increasing public awareness, giving psychological support to patients and their families, promoting medical research, and training the society to be able save lives knowing how to react in front of a sudden death.

Our vision is to eradicate sudden death caused by arrhythmic syndromes. We want to be the reference entity for patients affected by these inherited cardiac diseases giving answer to their needs and advocating for their interests in several areas as well as being the reference patient association for Health Care Providers specialized in these diseases being able to sensibilize the society about the existence of these diseases and promoting cardio protection to save lives.

 

Activities of the Organization

The main activities of our organization are:

 SAMS day, an event organized once a year together with Georgia Sarquella Brugada, head of the pediatric arrhythmia unit in Sant Joan de Deu Hospital where prestigious cardiologists and other expert geneticists, gynecologists and psychologists from several hospitals in Spain give lectures updating on all different inherited cardiac diseases and their progresses, and where patients and their families can share their experiences and participate in workshops on pulmonary resuscitation and healthy food. There is an attendance of approximately 500 participants in each edition.

Psychological support: the goal is to improve the quality of life of patients and their families offering them the support of a psychologist and also developing the expert patient figure which is of big help for a new diagnosed patient.

We are also working in the implementation of a mutual help group where patients living with inherited cardiac diseases would share fears and anxieties having the opportunity to meet with other patients who are in a similar situation as them.

Cardioprotect the society:
“Cardioprotected schools” Programme:  we offer free workshops to Schools for 17 years old students teaching them to be heroes saving lives with their own hands. We have already trained more than 2000 students and our goal is to offer these trainings to schools all over Spain.

We also have another project called “Entities with heart” where we offer workshops in pulmonary resuscitation to companies to train their employees and sponsor trainings at schools.

We also organize pulmonary resuscitation workshops for the population.

Networks: We are part of the Patient advocacy group in the ERN Guard Heart (Ester Costafreda is the co-chair and has been part of the group since the beginning in 2017), we are members of Eurordis, we are members of Feder (Spanish federation of Rare Diseases), and we are part of the Cardiomyopathy Patient Council in Global Heart Hub.

We participate actively in all these organizations being part of different working groups to be able to increase awareness at a European and International level of all these inherited cardiac diseases. And we have also been present at the European Parliament in Brussels to advocate for rare diseases and cardiomyopathies specifically.

We also participate in different congresses organized at a National level on sudden cardiac death, cardiogenetics and any other relevant event giving updates and information about these diseases and giving support to other patient associations in Spain.

More information www.samsasociacion.com
Contact: info@samsasociacion.com
Telephone number: +34 616909432
Facebook and Instagram: @samsasociacion

Photos of the SAMS Conference November 2018