Barbara, Mother of a young child with Alstrom Syndrome
E- Courses
A rare disease is a disease that rarely occurs in the population; depending on its rarity and varying degrees of severity, rare disease can cause disability and discrimination in so many contexts: from school to the
family and society. Learning about rare diseases is the first form of countering school inequality. Rare disease often causes discrimination by involving all family members, to the detriment of children (sick or siblings). Bullying, isolation, social marginalization and learning limitations are serious school risks that parents and teachers can contain and prevent through education.
Technology, aids and digital are a concrete resource to be known, valued and implemented in overcoming diversity. A simple and priority response to the educational and training gap on rare diseases for teachers and parents: a free training course divided into 12 e-learning lessons for parents and teachers working in the 6-14 age group.
E- COURSES
EDUCATIONAL APPLICATIONS AT SCHOOL (AGES 6-14): WHAT CHILDREN ASK FOR, HOW THEY USE THEM, AND WHY THEY DIVERSIFY
TECHNOLOGICAL AIDS FOR FRAGILITY
READING THE RARE DISEASES (WHAT THEY ARE - CLINICAL IMPACT) EDUCATIONAL APPLICATIONS AT SCHOOL (AGES 6-14): WHAT CHILDREN ASK FOR, HOW THEY USE THEM, AND WHY THEY DIVERSIFY
LIVING WITH A RARE DISEASE:
the bureaucratic process, obstacles and facilitations
SOCIAL DISTANCING -RARE AND COVID DISEASES
SOCIAL DISTANCING -RARE AND COVID DISEASES
FARMACI ORFANI: DEFINIZIONE EMA, ADATTAMENTO SCOLASTICO E UTILIZZO NELLA VITA QUOTIDIANA.
E- courses -RED
RED's beneficiaries are parents and teachers willing to embark on an in-depth journey on the inclusion of rare diseases in school through the application of digital, particularly for the 6-14 age group.The project is accessible from personal computers, Android or IOS phones. The RAREDUCANDO EDUCATION DIGITAL project also promotes the aggregate work of adult educators/parents/educational communities, to begin to share a path and thinking and acquire skills and knowledge, both in their own social core and, in international comparison, between the two partner countries and others, through the application in Italian, Greek and English.
