Resource type: e-learning
and
Target audience: Clinical Scientists or 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
-...
The European Reference Network on rare endocrine conditions (Endo-ERN) aims to improve access to high-quality healthcare for patients with rare hormonal disorders.
Various webinar on rare endocrine conditions are proposed :
- Update on congenital adrenal hyperplasia
- Prophylactic...
Scientific topics: Rare diseases
Keywords: Rare Diseases & Research
Resource type: Webinar, 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
Target audience for the webinars are clinicians, genetic counsellors, clinical scientists and other genetics health professionals. The presentation itself lasts approximately 20-30 minutes, and viewers have the opportunity to send questions on the subject area which will be addressed in a...
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
This self-learning tutorial aims to present the UNIX environment and to provide the most basic commands to users with no or very little UNIX knowledge.
The examples are taken from various Biological fields but have been chosen carefully to be easily accessible to a wide audience.
At the end of...