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 combating school inequality.
Rare disease often causes discrimination toward patients, however, 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, usable from the Moodle platform, divided into 12 e-learning lessons, with a final certificate and a major end-of-project event on October 30, 2022 in Padua.
The p63 Sindrome EEC International organization, from Padova, Italy, with ALTERA VITA from Syros Greece, implements an innovative program this year for RARE GENETIC DISEASES, thanks to the support of the ERASMUS PLUS program 2021-1-IT02 -KA210 ADU-000029645-21 MAY 2021.
Our first announcement and communication is dedicated to teachers/schools and escorts and parents/families of children aged 6 to 14 years.
Through the RED program, a distance learning course will be created in 3 different languages that will be introduced issues concerning rare genetic diseases, in a period of seasonal cultural change and social issues ", as stated by the president, Dr. Julia Volpato, cooperating body from Italy. http://www.sindrome-eec.it/it/
In total, it will be created and will be available to the public:
3 Online courses in English, Italian and Greek, on the MOODLE platform E-learning of ALTER VITA at the address:
Database with reports, bibliography, and good practices.
YOUTUBE CHANEL Erasmus + R.E.D. Project, and all social media networking to support the implementation and dissemination of the RED program.
A website dedicated to the program for rare genetic diseases
Through the MOODLE app, the utilization of m-Learning for the creation of virtual classrooms in schools by teachers who would like to implement and inform parents and students of their schools.
We hope and aim to create a network of institutions, schools, teachers, parents, and specialists, interested in rare genetics pan-European diseases, in cooperation with the European Network of Cities and Of Regions - ENSA that we participate as active members.