The third run of the MOOC (Massive Open Online Course) “Diagnosing Rare Diseases: from the Clinic to Research and back” co-developed by the European Joint Programme on Rare Diseases, ERN Ithaca, ERN Genturis and the French Foundation for Rare Diseases starts TODAY (April 18^th)! 

Registrations are free and open at this link. 

We specifically encourage medical and biomedical science students to register and follow the MOOC. 

The topics covered include:

• 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 a diagnosis 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.

You can check the syllabus here.

This course, along with other current and planned courses, are available upon registration (free) through the EHDEN Academy.

More information and registration here: https://academy.ehden.eu/

The next session will be focused on patient involvement on the 7 October at 14:00-15:30 (CET/Brussels Time). Registration is open here.

They will analyse the challenges and show how IMI-funded projects helped move the needle with particular focus on patients involvement.

Click here to see the agenda, the speaker, and more.

Targeted primarily at academic researchers, they encourage any academic researcher regardless of their research focus and current level (or absence) of engagement with patients to help them learn more about patient engagement and to further define resources and tools that can shape future patient engagement in research and development.

The survey is currently collecting responses here, but will close on July 31st.

This initiative is part of the EATRIS-Plus project, EATRIS’ flagship project in Personalised Medicine.

More information: https://eatris.eu/news/patient-engagement-in-academic-research-survey-launched/

The call is currently open but will close on July 15th at 17:00 CET.

Applicants who are selected can avail the following benefits:

• Facilitation of communication with patients, their carers and their families
• Support for patients and carers throughout the research process
• Data storage with secure environment and GDPR-compliant protocols and procedures
• Support for ethical submission and approval
• Ensuring that validated users will be able to complete questionnaires
• Data analysis not only for your study, but also for the users who contribute with their data, so they can visualise where they stand compared to their peers in an anonymous and aggregated way
• Provision of a data science report at the end of research study with all the results

More information and application process here: https://www.share4rare.org/news/share4rare-launches-1st-open-call-patient-driven-research-projects

The online conference will take place over four evening sessions of 2.5 hours each on June 1–4, 2021. The conference will provide simultaneous interpretation in various languages.

During the conference, leading Duchenne experts will touch on topics such as respiratory care, nutrition, bone health management, stress dosing steroids, treating behavioural and learning disabilities, caring for younger patients, pain management, female Duchenne carriers, physiotherapy, dealing with gastrointestinal problems, arm function, and exercise.

To participate, please contact your national patient organisation. Patient organisations who are members of the WDO can send details of up to 20 representatives each as conference participants before May 22 to Suzie-Ann Bakker (suzieann.bakker[at]worldduchenne[dot]org).

More information here: https://www.worldduchenne.org/news/duchenne-care-conference-2021/