On July 24th, 2023, we held the first transnational meeting of the Erasmus+ QUALITY YOUTH MENTORING FOR INCLUSION. All the partners involved in the project (Fundación Isabel Gemio, Federación ASEM, Parent Project APS, Rare Diseases Croatia and Cyprus Alliance for Rare Disorders) attended the meeting in Madrid to define the structure and objectives of the principal results of the initiative co-funded by the European Union.
First, Fundación Isabel Gemio presented the conclusions of the analysis report ‘RARE DISEASES ON EUROPEAN YOUTH’ developed by the consortium. The aim of the report was to understand the situation of young people affected by Rare Diseases in Europe:
- In 2008, the European Commission adopted the Communication “Rare Diseases: A Challenge for Europe”. It focused on three main areas: improving the recognition and visibility of RDs; supporting RD policies in Member States; and developing European cooperation, coordination, and regulation in relation to RDs.
- In the EU, Rare Diseases are those whose prevalence is below 5 per 10,000 inhabitants.
- It is estimated that there may be more than 7,000 rare diseases.
- The 80% has a genetic origin and two thirds manifest themselves before two years old.
- Young people with rare diseases in Europe are affected by the absence of accessible infrastructures, psychological support, genetic counselling services, low level of teacher and employer awareness, accessible education and employment programmes, disability awareness and acceptance.
As to the mentoring process, in which a big brother will help a younger brother to overcome obstacles and barriers of the daily life, the partners agreed that it will be divided into different phases such as building the relationship, feedback and assessment, skill-building and problem advice.
After the meeting, Dra. Belén Pérez welcomed the consortium at the CBM Severo Ochoa, a pioneer scientific centre ascribed to the Universidad Autónoma de Madrid. During our visit, Dra. Perez’s team and PhD students explained to partners the latest findings on the line of research ‘Translational Research in Hereditary Metabolic Diseases and Other Rare Genetic Diseases’ and we could observed on the microscopes some samples of their studies. We would like to thank Belén and their students for their time and generosity.
The partnership of the Erasmus+ Quality Youth Mentoring for Inclusion will meet again next September to continue developing the results of the initiative.