Associazione Italiana dei Cardiopatici Congeniti bambini e Adulti (AICCA ONLUS)
Italian Patient Organisation on Congenital Heart Diseases in Adults and Children
- Familial Electrical Diseases
- Long QT syndrome
- Short QT syndrome
- Brugada syndrome
- Catecholaminergic polymorphic ventricular tachycardia
- Idiopathic ventricular fibrillation
- Familial Cardiomyopathies
- Arrhythmogenic cardiomyopathy
- Dilated cardiomyopathy
- Hypertrophic cardiomyopathy
- Restrictive cardiomyopathy
- Non-compaction cardiomyopathy
- Congenital Heart Diseases
- Tricuspid atresia
- Pulmonary stenosis
- Pulmonary atresia
- Aortic and mitral valves
- Univentricular heart
- Other Rare Cardiac Diseases
- Rare tumors
- Other rare cardiac diseases
- Sudden cardiac death
- Grief support
Aims of the Organization
Every year 8 out of 1,000 children are born with a congenital heart disease: a heart malformation present in a person from birth. In Italy about 100.000 children became adults. Since 2009, we have been a reference in the daily life of congenital heart disease patients. Our group is made by patients, in cooperation with doctors, surgeons, psychologists and peer counselors working inside the Pediatric Cardiology, Heart Surgery and congenital Adult Department at IRCCS Policlinico San Donato and in many branches on the national territory. Our goal is to convert a difficult experience which marks many children, young and adults life and their families’ in a positive talent, helping patients with congenital heart disease to overcome their problems during adolescence and reaching the adult age with the awareness of their limits, but also of their potential in building their future. In addition, AICCA is active on institutional basis to raise awareness about congenital heart diseases and to ensure that the rights of all people who suffer from it are protected. One of the most important goals we achieved was the recognition of the National Day on February 14, announced through a Directive of the President of the Council of Ministers in 2019. Having a National Day recognized by the Italian State means having the opportunity to increase information and awareness, supporting all people with congenital heart disease and their families.
Projects and activities:
- Humanization of Treatments: aimed at guaranteeing assistance that places the human person in its holistic dimension at the center of the diagnostic-therapeutic pathways, considered in the totality of its physical, mental and emotional components. Our Art Therapy, Teddy Therapy and Happy Therapy activities fit into this perspective.
- Art Therapy Project: Nonverbal language of the art is one of the most powerful way to reach what we have inside, bringing out fears, anxieties and dreads. Since 2010 AICCA carries on an art therapy lab for hospitalized children and adolescents.
- Peer Counseling: ‘’Peer counseling” methodology is an important tool to produce empowerment in patients with congenital heart disease. The peer-counselor is a person having skills in aid relationship techniques and psychological support who offers assistance and support to patients who are facing his same experience. Together with the psychologist, he carries out an important role inside the social healthcare system in Italy and Europe.
- Accommodation fund for families: Many cardiopathic patients need treatments and long recovery periods, often far from home. Indeed hundreds of people, especially children, every year come from all over Italy to be treated at the Department of Pediatric and Congenital Adult Cardiology and Heart Surgery of IRCCS General Hospital San Donato. AICCA offers a concrete support to these families providing comfortable accommodations, easily reachable from the General Hospital, creating a social welcome network on the territory thanks to agreements with hotels and Bed&Breakfast.
- Happy Therapy Project: we organise recreational therapeutic moments between patients and their families who are experiencing the hospitalization at the Department of Pediatric and Congenital Adult Cardiology and Heart Surgery of IRCCS General Hospital San Donato. Our goal is to promote socialization among the participants and to give amusement during the hospital routine.
- Teddy Therapy Project: Our goal is to adopt some strategies to let children become familiar with the new environment, to socialize with new people and to familiarise with the hospital procedures and the pre-operative preparation. The soft toy makes the child able to self-control his emotions.
- Transition Clinic: Through a supporting path built together with children, adolescents and their families, we want to create awareness of their disease, to facilitate their personal growth and the assistance continuity (follow up), accompanying patients in the most complex moments of their live.
- National supportive network: AICCA unites patients and their families creating a national supportive network, with the cooperation of doctors, psychologists and counselors, with the aim of forming self-help groups in the regional branches, of sharing the common difficulties and exchanging opinions and experiences.
- Advocacy: AICCA, as a patient association, works to ensure that patients and citizens are increasingly involved in decision-making processes concerning health, planning, management and evaluation of health services. The goal is to fulfill various functions such as being collectors and sources of information relating to specific disclosed pathologies, representing a place of information for patients or their families, being an “advocate” in defense of patients’ rights, allowing access to a broader knowledge base about available care and treatment processes.
Representative: Giovanna Campioni
More information: www.associazioneaicca.com