“Either we will find a road or we will build one.”

AICCA (Italian Association of Congenital Heart Diseases for children and adults) has been the point of reference in Italy since 2009 in the daily life of people born with heart malformations. The group is made up primarily of patients, in collaboration with doctors, surgeons, psychologists and peer counselors operating within the Pediatric Cardiology and Heart Surgery and Adult Congenital Department of the IRCCS Policlinico San Donato and in numerous locations throughout the country.

In the large AICCA family we accompany people born with a cardiac malformation and their families in all the various stages of life and in the delicate moment of hospitalization, trying to provide all the tools and aids necessary to overcome difficulties, improve awareness of one’s situation and guarantee a quality of life in which hope for the future is never lacking.

The Association’s commitment is aimed at the humanization of care so as to provide assistance that places the human person at the center of the diagnostic-therapeutic pathways at 360 degrees in its holistic dimension, i.e. considered in the totality of its physical, mental and emotional. We work so that respect for the dignity, quality of life and well-being of each person are the fundamental element of all decisions concerning care planning. It is precisely in this type of context that we carry out peer counseling, psychological support, support in the transition from childhood to adulthood, art therapy, teddy therapy and happy therapy. The latter in particular propose, on the one hand, to encourage familiarization with the hospital environment and with the procedures; on the other hand, to promote socialization among patients through leisure activities in the ward that break the hospital routine and the sense of solitude.

Furthermore, we financially support families who find themselves in difficulty due to the huge costs of staying in hotels for a long time during the period of hospitalization and convalescence at the San Donato Polyclinic.

Of fundamental importance are the advocacy actions activated at an institutional and public level. The goal is to ensure that patients and citizens are increasingly involved in decision-making processes concerning health, planning, management and evaluation of health services. AICCA, as a patient association, therefore performs various functions including that of collecting and disseminating information relating to specific pathologies, representing a place of information for patients or their family members, defending patients’ rights and allowing access to a more broad knowledge base about available care and treatment processes. Furthermore, we promote nationwide awareness campaigns on congenital heart disease and Non-Visible Disabilities, i.e. not directly recognizable at a glance, so as to inform public opinion and disseminate good practices for a policy of inclusion, respect and kindness.

One of the most important milestones achieved was the recognition on February 14 of the National Day on Congenital Heart Diseases, announced through a Directive of the President of the Council of Ministers in 2019.

Finally, AICCA unites patients and their families by creating a national support network, with the collaboration of doctors, psychologists and counselors, with the aim of forming self-help groups in regional offices, so as to share common difficulties and exchange opinions and experiences. Periodically, events are organized throughout the national territory and AICCA Days so as to involve volunteers, patients and families in shared activities. Furthermore, several Whatsapp groups coordinated by AICCA are active with the aim of promoting socialization and immediately intercepting needs, requests and suggestions, also offering remote support.

CONTACTS

AICCA ETS
Via Pascoli 37, 20097, San Donato Milanese (Milano)
Italia

Web: www.associazioneaicca.com
Mail: aiccaonlus@gmail.com
Tel: 02 52774675
Instagram e Fb: aiccaonlus