Target audience: rare disease patients repr...
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
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
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
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
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