Training future medical professionals on the everyday realities of rare diseases in order to make medical education more accessible, inclusive, avoid possible risks and negligence, and open new paths to
employability.
Context
Throughout the European Union, the everyday livelihoods of people living with rare diseases remains poorly understood. This project aligns with charities and patient activists advocating for increased awareness and improved understanding by focusing on medical education. Our target group are medical professionals currently undergoing educational training, for whom we are building multilingual educational kits, virtual courses, and methodological guides and advice.
The aim of our project is to improve accessibility and inclusivity in medicine; to avoid any possible risks or negligence through lack of knowledge on rare diseases; and to open new professional pathways for future medical professionals wishing to pursue a career in rare diseases. To do so, this project collaborates with rare diseases experts and Vocational education and training (VET) teachers in order to create content on rare diseases and bring inclusive methods into their classrooms.
Objectives
- Understand what rare diseases exist in the project’s participating countries and how these diseases impact patients’ social, economic, cultural, and psychological livelihoods;
- Understand how future healthcare professionals are being educated and trained in rare diseases;
- Collaborate with rare diseases experts and VET teachers to create educational guides and virtual courses that can be used in educational training;
- Improve healthcare education on rare diseases.
Activities
- 8 multilingual educational guides that promote inclusive VET classrooms with rare diseases students;
- Create a virtual course across the project’s partner countries;
- Visibility on rare diseases in Europe through social media posts and project website;
- Multiplier events in Spain, Italy, and Portugal
Resources
- 8 multilingual educational guides addressing issues such as psychological and socio-cultural consequences of living with rare diseases;
- Educational content to train healthcare professionals and teachers;
- Virtual Course for the training of VET teachers;
- Advice and guidance services for teachers created by rare diseases experts;
- Open Educational Resources (5 per unit) for teachers to use in classrooms.
Impact
- 8 micro-credential modules covering Rare Diseases and Healthcare; Socio-Cultural and Community Services; Congenital Anomalies; Systemic and Rheumatological Diseases; Endocrine Diseases; Neurological Diseases; Skin Diseases; Undiagnosed Rare Diseases
- Transnational collaborations with VET schools across the partner countries
- Synchronous and asynchronous communication tools between professionals, teachers, and experts from various fields in rare diseases
Partners
- Fundación Isabel Gemio (Spain, coordinator)
- Federación Española de Enfermedades Neuromusculares (Spain)
- Association Charcot-Marie-Tooth et neuropathies péripheriques (France)
- Universidades de Évora (Portugal)
- Hrvatski Rvatski Savez Za Rijetke Bolesti (Croatia)
- CESIE ETS (Italy)
