The European Joint Programme on Rare Diseases has launched its first academic education course “Diagnosing Rare Diseases: from the Clinic to Research and back” related to diagnosis in the rare disease’s context. The course, started on April 26th, will last 5 weeks with 3 hours weekly study.
In 2019 the EJP RD has launched a survey, to which TEDDY Network has participated, to examinate the needs, targets, and expectations around the development of an online academic training courses tackling rare diseases research.
The development of the courses is coordinated by the Foundation for Rare Diseases, one of the EJP RD partners.
Who is the course for?
This course is designed for individuals with a keen interest in diagnostic research and rare diseases. While primarily designed for medical students and PhD/post-doc students in biomedical sciences, it will also be of interest to Patients Advocacy Organisations’ representatives, healthcare professionals or paramedics who want to further their knowledge of rare diseases diagnosis.
What topics will you cover?
- The diagnostic process and the types of genetic tests available for rare diseases.
- The differences in rare genetic diseases patient pathways.
- Technological advances for diagnostic research.
- The role of collaborative studies and data sharing in rare diseases diagnosis.
- The impact of having or lacking a diagnosis on patients’ lives.
- The role and place of physiopathology approaches as well as social sciences research in the context of rare diseases diagnosis.
Learners will gain insight into patients’ experiences, will discuss key issues relating to this topic and will also have the possibility to undertake their own internet-based investigations.
To register for free and have more information on the course click here.