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Target audience: rare disease patients repr... 

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://tess.elixir-europe.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://tess.elixir-europe.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
European Patients’ Academy Webinars

12 webinars from EUPATI, for patients and advocates

Scientific topics: Rare diseases

Keywords: Rare Diseases & Research

Resource type: Webinar, e-learning

European Patients’ Academy Webinars https://tess.elixir-europe.org/materials/european-patients-academy-webinars 12 webinars from EUPATI, for patients and advocates Rare diseases Rare Diseases & Research rare disease patients representatives Patient Advocates
European Patients’ Academy Expert Training Course

Online course in medicines research and development. Not solely focused on rare diseases.

Scientific topics: Rare diseases

Keywords: Rare Diseases & Research

Resource type: online modules, e-learning, Training materials

European Patients’ Academy Expert Training Course https://tess.elixir-europe.org/materials/european-patients-academy-expert-training-course Online course in medicines research and development. Not solely focused on rare diseases. Rare diseases Rare Diseases & Research 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://tess.elixir-europe.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://tess.elixir-europe.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://tess.elixir-europe.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