Topic outline
General
RAREDUCANDO, information begins at school. - Our project will talk about fragility-rare disease-bullying-cyberbullying in the health emergency era.
It is a strategic partnership among Italy - Greece to create a strategic alliance on training activity aimed to fight social and educational exclusion.
When we talk about young people's fragility, there is no distinction between effects and causes. The fragility creates discomfort, anxiety, depression, and loneliness and degenerates into isolation without return, especially in a historical moment where the social texture does not offer identified objectives, and the numbers lead to consider the problem a social emergency especially at school age.
“A rare disease is a disease that rarely occurs in the general population” causing a healthcare emergency. Due to its rarity and to the several grades of severity, the rare disease can be considered a feature creating fragility and discrimination in so many contexts, beginning from the school to the social environment. Rare disease causes fragility – not only to patients
but for all familiar – but in our contemporary world, everybody can be considered fragile. This can be considered a common fragility in the contemporary world. From this point of view, we can consider that every youth is fragile in the scholarship period.
Rare disease causes bullying – but not only rare disease but any other single feature which is not common – the character of each of us, our ideologic, political, lifestyle choices – can be chance to bullying attack.
Rare disease causes bullying in case the relationship is among people and cyberbullying in case of communication and diversity judgment is in a digital context, in 4.0 connections, without training, awareness, and consciousness of communication as a strong weapon without a control. This is a cause of discomfort not only in the rare disease context but in any other fragile person modifying habits, esteem, and autonomy of people hit by bullying because different, defining their character and their ideological, political, and lifestyle choices.
In order to give an answer to the lack of social, education, and training initiatives on rare diseases, the project aims at supporting social initiatives for the community beginning to the scholar context.https://erasmusredproject.wixsite.com/red-project
LESSON 2-TΗΕ RARE DISEASES: DATABASE, BIBLIOGRAPHY AND BEST PRACTICES
A) e-course 2- database_expert Giulia Volpato
LESSON 3 -EDUCATIONAL APPLICATIONS AT SCHOOL
A) EDUCATIONAL APPLICATIONS AT SCHOOL (AGES 6-14): WHAT CHILDREN ASK FOR, HOW THEY USE THEM, AND WHY THEY DIVERSIFY
B ) Lesson 3 _expert_tecnology educational apllication at school, d' ambrosio
LESSON 4 -TECHNOLOGY FOR FRAGILITY
4A) Storytelling TECHNOLOGICAL AIDS FOR FRAGILITY
4B)experience_ROBOTICS FOR FRAGILITY
4C) experts technological aids for fragility - Paolo CarraroΕνότητα 6η- Αναγνωρίζοντας τις σπάνιες ασθένειες -κλινικές επιστώσεις,(Ποιες είναι-
6A ) STORYTELLING -Αναγνωρίζοντας τις σπάνιες ασθένειες -Ποιες είναι (κλινικές επιστώσεις και κοινωνική ζωή)
6B) ΕΙΔΙΚΟΣ --Αναγνωρίζοντας τις σπάνιες ασθένειες - Ποιες είναι (κλινικές επιστώσεις και κοινωνική ζωή)
GUIDE FOR SUPPORT OF PARENTS
LESSON 7- LIVING WITH A RARE DISEASE:the burocratic process, obstacles and facilitations
7A) STORYTELLING - LIVING WITH A RARE DISEASE: THE BUREAUCRATIC PROCESS
7B ) e-couse 7_expert_living with a are rare diseases - burocratic aspects- dr.ssa Taruscio
LESSON 8- SOCIAL DISTANCING -RARE AND COVID DISEASES
8Α) Storytelling_INTERPERSONAL DISTANCE RARE DISEASES AND COVID19
8B) Expert interpersonal distance dr Tricarico
8C) e course 8 EXPERT interpersonal distance - Alfonso D'Ambrosio
LESSON 10 - ORPHAN DRUGS: EMA DEFINITION, SCHOOL ADAPTATION, AND USE IN DAILY LIFE.
10A) STORYTELLING (ISABELLA)
10B) EXPERTISE (Loris brunetta ref. EMA patients)
LESSON 12 FINAL EVALUATION QUESTIONNAIRE
BENVENUTI IN RED, RAREUCANDO-EDUCAZIONE-DIGITALE
Nell’ultimo trentennio la conoscenza delle malattie rare ha avuto un impulso importante a livello Europeo e mondiale; molto di questo è grazie all’utilizzo di massa del digitale e delle sue applicazioni.
Le informazioni distorte on-line, l’assenza di riferimenti certi, in periodo epocale difficile e sfidante, sono problematiche conosciute, ma pochi sanno che l’errata informazione può produrre maggior danni della stessa malattia rara, sia a livello psicofisico che socioculturale.
Red non vuole dare soluzioni ma presentare la realtà e le buone pratiche applicate da genitori e insegnanti nel quotidiano del bambino dai 6 ai 14 anni, mettendo insieme per la prima volta, grazie all’eccellente collaborazione del partenariato Italia p63 -Grecia Alteravita, un progetto di formazione per gli adulti, tra formazione empatica e coinvolgente e documenti bibliografici e di approfondimento per ogni singola lezione e-learning , anche con la spiegazione tecnica degli esperti, fruibile in piattaforma moodle, inoltre utilizzando e-twinning, sito web dedicato…..,
“Abbiamo pensato a RED come opportunità per i genitori rari che si trovano ad affrontare una tappa importante nella vita dei propri figli all'attività di inserimento scolastico e, delle scelte didattiche educative future.
RED permetterà al target group di riferimento, genitori e insegnanti di bambini dai 6 ai 14 anni, di confrontarsi con informazioni certe, di confronto e di stimolo con l’obiettivo di formare informando”, affermano i due responsabili e partner Giulia Volpato per ass. p63 Sondrome E.E.C International APS Padova Italia e Miltos Sakallariou Alteravita soc. coop. Syros Grecia.
Ti sarà quindi chiesto di compilare un breve questionario di monitoraggio nelle tre fasi del corso, con l’esito finale dell’attestato di partecipazione a RED.
Noi non vediamo l’ora di cominciare, e tu?
Ringraziandoti sin d’ora
Lo Staff
R.E.D
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