EJP RD MOOC "Diagnosing Rare Diseases: from the Clinic to Research and back"
Discover the role of research, clinical investigation and data sharing in diagnosing rare diseases. This course offers an exploration of key questions around rare disease diagnostic research and issues today, as well as insights into patient experiences.
Scientific topics: Rare diseases
Keywords: Rare Diseases & Research
Resource type: e-learning
EJP RD MOOC "Diagnosing Rare Diseases: from the Clinic to Research and back"
https://www.futurelearn.com/courses/rare-genetic-disease
http://tess.elixir-uk.org/materials/ejp-rd-mooc-diagnosing-rare-diseases-from-the-clinic-to-research-and-back
Discover the role of research, clinical investigation and data sharing in diagnosing rare diseases. This course offers an exploration of key questions around rare disease diagnostic research and issues today, as well as insights into patient experiences.
Rare diseases
Rare Diseases & Research
PhD students
postdoctoral researchers
Researchers
healthcare professionals
Patient Advocates
rare disease patients representatives
Webinars from the European Reference Network in Rare Hematological Diseases (EuroBloodNet)
The aim of these educational activities is to promote the interest on very innovative topics in order to stress among health professionals the cutting-edge advances in the field of Rare Hematological Diseases. One or 2 webinars per month, each of them lasting 45 minutes.
Scientific topics: Rare diseases
Keywords: Rare Diseases & Research
Resource type: Webinar, e-learning
Webinars from the European Reference Network in Rare Hematological Diseases (EuroBloodNet)
https://eurobloodnet.eu/education/thursdays-webinars/
http://tess.elixir-uk.org/materials/ern-eurobloodnet-thursdays-webinars
The aim of these educational activities is to promote the interest on very innovative topics in order to stress among health professionals the cutting-edge advances in the field of Rare Hematological Diseases. One or 2 webinars per month, each of them lasting 45 minutes.
Rare diseases
Rare Diseases & Research
Health Care Professionals
health professionals
Patient Advocates
rare disease patients representatives
Rheumatic and musculoskeletal diseases online resources from EULAR (European League Against Rheumatism)
Several online courses on rheumatic and musculoskeletal diseases encompassing several rare diseases.
Scientific topics: Rare diseases
Keywords: Rare Diseases & Research
Resource type: online modules, e-learning
Rheumatic and musculoskeletal diseases online resources from EULAR (European League Against Rheumatism)
https://esor.eular.org/totara/catalog/index.php?catalog_cat_browse=74&orderbykey=text&itemstyle=narrow
http://tess.elixir-uk.org/materials/rheumatic-and-musculoskeletal-diseases-resources
Several online courses on rheumatic and musculoskeletal diseases encompassing several rare diseases.
Rare diseases
Rare Diseases & Research
Health Care Professionals
health professionals
physisians
Patient Advocates
rare disease patients representatives
Patient-Centered Outcomes Research Institute (PCORI) Training : A Program for Rare Disease Patient Advocates
Tools and templates on the subject of "patient and research"
Scientific topics: Rare diseases
Keywords: Rare Diseases & Research
Resource type: educational materials, e-learning
Patient-Centered Outcomes Research Institute (PCORI) Training : A Program for Rare Disease Patient Advocates
https://www.pcori.org/research-results/2015/pcor-training-program-rare-disease-patient-advocates
http://tess.elixir-uk.org/materials/patient-centered-outcomes-research-institute-pcor-training-a-program-for-rare-disease-patient-advocates
Tools and templates on the subject of "patient and research"
Rare diseases
Rare Diseases & Research
Patient Advocates
rare disease patients representatives
Findacure's e-learning resources on rare diseases
Findacure’s e-learning portal is a central hub of information and training for rare disease advocates and patient groups. It contains educational materials, including written guides, animated videos, presentations and webinars, to help the establishment and growth of rare disease patient groups.
Scientific topics: Rare diseases
Keywords: Rare Diseases & Research
Resource type: Webinar, Video, Presentation, Training materials, e-learning
Findacure's e-learning resources on rare diseases
https://portal.findacure.org.uk/
http://tess.elixir-uk.org/materials/findacure-s-e-learning-video-library
Findacure’s e-learning portal is a central hub of information and training for rare disease advocates and patient groups. It contains educational materials, including written guides, animated videos, presentations and webinars, to help the establishment and growth of rare disease patient groups.
Rare diseases
Rare Diseases & Research
Patient Advocates
rare disease patients representatives