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10 materials found

Target audience: Professors  or Patient Advocates  


EJP RD MOOC "Diagnosing Rare Diseases: from the Clinic to Research and back"

Topics covered:
- 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
-...

Scientific topics: Rare diseases

Keywords: Rare Diseases & Research

Resource type: e-learning

Slides from Data Management Planning Workshop

Slides from Data Management Planning online workshop for Life Science Projects for researchers at UiO 2020-12-11

Scientific topics: Data management

Operations: Data handling, Data retrieval, Deposition

Keywords: Data management plan, data management

Resource type: Slides

Slides from Data Management Planning Workshop

Slides from Data Management Planning online workshop for Life Science Projects for researchers at NTNU 2020-12-01

Scientific topics: Data management

Operations: Data handling, Data retrieval, Deposition

Keywords: Data management plan, data management

Resource type: Slides

Eurordis Open Academy

Through the Open Academy, EURORDIS empowers patient advocates to have the confidence and knowledge needed to bring their expertise to discussions on health care, research and medicines development. EURORDIS alumni engage in these discussions as equal partners, side by side with policy makers,...

Scientific topics: Rare diseases

Keywords: Rare Diseases & Research, Rare Diseases

Resource type: course materials, e-learning

Webinars from the European Reference Network in Rare Hematological Diseases (EuroBloodNet)

Webinars mainly address very rare diseases, complex disorders, highly specialized procedures and implementation of guidelines. At the same time, webinars' programs that are specifically addressed to patients intend to increase the awareness on a specific rare hematological disease among patients'...

Scientific topics: Rare diseases

Keywords: Rare Diseases & Research

Resource type: Webinar, e-learning

Rheumatic and musculoskeletal diseases online resources from EULAR (European League Against Rheumatism)

EULAR (European League Against Rheumatism) has made substantial efforts and investment in developing e-learning opportunities with the newest developments in the field of rheumatology.
All EULAR courses are highly subsidized and managed by a scientific course committee responsible for the...

Scientific topics: Rare diseases

Keywords: Rare Diseases & Research

Resource type: online modules, e-learning

Patient-Centered Outcomes Research Institute (PCORI) Training : A Program for Rare Disease Patient Advocates

In response to rare-disease patients’ desire to make research more meaningful to their community, PCORI created an online Program for Rare Disease Patient Advocates.

Scientific topics: Rare diseases

Keywords: Rare Diseases & Research

Resource type: educational materials, e-learning

Findacure's e-learning resources on rare diseases

The portal is aimed at rare disease advocates, patient groups and charities, though anyone with an interest in rare diseases or advocacy is welcome to sign-up. It is completely free to use, and users are encouraged to contact Findacure with suggestions for new content.
The portal shares ‘how to’...

Scientific topics: Rare diseases

Keywords: Rare Diseases & Research

Resource type: Webinar, Video, Presentation, Training materials, e-learning

Slides from Data Management Planning Workshop

Slides from Data Management Planning workshop for Life Science Projects in Ås 11 March 2020

Scientific topics: Data management

Operations: Deposition, Data retrieval, Data handling

Keywords: Data management plan, data management

Resource type: Slides

Slides from Data Management Planning Workshop

Slides from Data Management Planning workshop for Life Science Projects in Bergen 04 March 2020

Scientific topics: Data management

Operations: Data handling, Data retrieval, Deposition

Keywords: Data management plan, data management

Resource type: Slides