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
Eurordis Open Academy
The EURORDIS Open Academy currently encompasses the Winter School on Scientific Innovation and Translational Research, the Summer School on Medicines Research and Development, the Leadership School and the Digital School
Scientific topics: Rare diseases
Keywords: Rare Diseases & Research, Rare Diseases
Resource type: course materials, e-learning
Eurordis Open Academy
https://openacademy.eurordis.org
http://tess.elixir-uk.org/materials/eurordis-online-trainning-modules
The EURORDIS Open Academy currently encompasses the Winter School on Scientific Innovation and Translational Research, the Summer School on Medicines Research and Development, the Leadership School and the Digital School
Rare diseases
Rare Diseases & Research, Rare Diseases
Patient Advocates
Life Science Researchers
Biomedical researchers
Educational webinars on rare endocrine conditions (ENDO-ERN)
Various webinar on rare endocrine conditions
Scientific topics: Rare diseases
Keywords: Rare Diseases & Research
Resource type: Webinar, e-learning
Educational webinars on rare endocrine conditions (ENDO-ERN)
https://endo-ern.eu/events/webinars/
http://tess.elixir-uk.org/materials/endo-ern-educational-webinars
Various webinar on rare endocrine conditions
Rare diseases
Rare Diseases & Research
Clinical Scientists
Biomedical researchers
healthcare professionals
Educational webinars on rare and complex epilepsies (EpiCARE ERN)
Free online seminars on Thursdays related to rare epilepsies
Scientific topics: Rare diseases
Keywords: Rare Diseases & Research
Resource type: Webinar, e-learning
Educational webinars on rare and complex epilepsies (EpiCARE ERN)
https://epi-care.eu/webinars/
http://tess.elixir-uk.org/materials/epicare-ern-educational-webinars
Free online seminars on Thursdays related to rare epilepsies
Rare diseases
Rare Diseases & Research
Health Care Professionals
health professionals
Biomedical researchers
Postgraduate Curriculum in Rare Kidney Diseases developed by ERKNet
ERKNet Postgraduate Curriculum in Rare Kidney Diseases / ESPN – IPNA Curriculum in Pediatric Nephrology
Scientific topics: Rare diseases
Keywords: Rare Diseases & Research
Resource type: Webinar, e-learning
Postgraduate Curriculum in Rare Kidney Diseases developed by ERKNet
https://erknet.org/index.php?id=10
http://tess.elixir-uk.org/materials/erknet-education-and-training
ERKNet Postgraduate Curriculum in Rare Kidney Diseases / ESPN – IPNA Curriculum in Pediatric Nephrology
Rare diseases
Rare Diseases & Research
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
Rare and complex urogenital diseases and condition webinars (eUROGEN ERN)
Monthly webinar programme on rare congenital uro-recto-genital anomalies.
Scientific topics: Rare diseases
Keywords: Rare Diseases & Research
Resource type: Webinar, e-learning
Rare and complex urogenital diseases and condition webinars (eUROGEN ERN)
https://eurogen-ern.eu/what-we-do/education-training/
http://tess.elixir-uk.org/materials/eurogen-education-and-training-webinars
Monthly webinar programme on rare congenital uro-recto-genital anomalies.
Rare diseases
Rare Diseases & Research
healthcare professionals
health professionals
Education and Training webinars on genetic tumor risk syndromes (ERN GENTURIS)
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
Education and Training webinars on genetic tumor risk syndromes (ERN GENTURIS)
https://www.genturis.eu/l=eng/Education-and-Training/Webinars.html
http://tess.elixir-uk.org/materials/genturis-education-and-training-webinars
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 question & answer session afterwards.
Rare diseases
Rare Diseases & Research
Clinicians
Clinical Scientists
health professionals
geneticists
Educational videos on rare and low prevalence complex diseases of the heart (ERN GUARD-Heart)
Educational videos for experts
Scientific topics: Rare diseases
Keywords: Rare Diseases & Research
Resource type: Video, e-learning
Educational videos on rare and low prevalence complex diseases of the heart (ERN GUARD-Heart)
https://guardheart.ern-net.eu/experts/educational-videos/
http://tess.elixir-uk.org/materials/ern-guard-heart-educational-videos
Educational videos for experts
Rare diseases
Rare Diseases & Research
health professionals
Health Care Professionals
Webinars on Hereditary metabolic diseases (MetabERN)
To share information and documentation with stakeholders involved in the field of hereditary metabolic disorders.
Scientific topics: Rare diseases
Keywords: Rare Diseases & Research
Resource type: Webinar, e-learning
Webinars on Hereditary metabolic diseases (MetabERN)
http://metabern-educ.eu
http://tess.elixir-uk.org/materials/metabern-library-teaching-and-training-programmes
To share information and documentation with stakeholders involved in the field of hereditary metabolic disorders.
Rare diseases
Rare Diseases & Research
Health Care Professionals
health professionals
Educational webinars on Rare and Complex Connective Tissue and Musculoskeletal Diseases (ERN ReCONNET)
ERN ReCONNET proposes free online training and education.
Scientific topics: Rare diseases
Keywords: Rare Diseases & Research
Resource type: Webinar, Video, e-learning
Educational webinars on Rare and Complex Connective Tissue and Musculoskeletal Diseases (ERN ReCONNET)
https://reconnet.ern-net.eu/webinar/
http://tess.elixir-uk.org/materials/ern-reconnet-educational-webinars
ERN ReCONNET proposes free online training and education.
Rare diseases
Rare Diseases & Research
Health Care Professionals
health professionals
Webinars and Pills of knowledge Videos on rare vascular diseases (VASCERN)
Short single video lessons (of approximately 3-5 minutes long) and webinars.
Scientific topics: Rare diseases
Keywords: Rare Diseases & Research
Resource type: e-learning, Video
Webinars and Pills of knowledge Videos on rare vascular diseases (VASCERN)
https://vascern.eu/what-we-do/pills-of-knowledge/
http://tess.elixir-uk.org/materials/vascern-webinars-and-pills-of-knowledge-videos
Short single video lessons (of approximately 3-5 minutes long) and webinars.
Rare diseases
Rare Diseases & Research
medical students
Health Care Professionals
health professionals
The Genomics Era: the Future of Genetics in Medicine
This free online course is available on FutureLearn and developed by the St George's University of London and St George's University Hospitals NHS Foundation Trust. It provides healthcare professionals with a basic grounding in genomic medicine. It will introduce you to new genomic technologies,...
Scientific topics: Rare diseases
Keywords: Rare Diseases & Research
Resource type: e-learning
The Genomics Era: the Future of Genetics in Medicine
https://www.futurelearn.com/courses/the-genomics-era
http://tess.elixir-uk.org/materials/the-genomics-era-the-future-of-genetics-in-medicine
This free online course is available on FutureLearn and developed by the St George's University of London and St George's University Hospitals NHS Foundation Trust. It provides healthcare professionals with a basic grounding in genomic medicine. It will introduce you to new genomic technologies, which are revolutionizing medicine and will, in time, provide the mainstay of patient diagnosis, treatment and disease prevention.
Rare diseases
Rare Diseases & Research
healthcare professionals
Whole Genome Sequencing: Decoding the Language of Life and Health
This course is available on FutureLearn and developed by Health Education England (NHS).
The course has been designed for healthcare professionals and science/medical students who have limited or no understanding of the who genome sequencing process and its many varied uses. Non-specialists who...
Scientific topics: Rare diseases
Keywords: Rare Diseases & Research
Resource type: e-learning
Whole Genome Sequencing: Decoding the Language of Life and Health
https://www.futurelearn.com/courses/whole-genome-sequencing
http://tess.elixir-uk.org/materials/whole-genome-sequencing-decoding-the-language-of-life-and-health
This course is available on FutureLearn and developed by Health Education England (NHS).
The course has been designed for healthcare professionals and science/medical students who have limited or no understanding of the who genome sequencing process and its many varied uses. Non-specialists who want to learn more about sequencing and genomic medicine are also very welcome.
Rare diseases
Rare Diseases & Research
Health Care Professionals
health professionals
medical students
science students
Genomic Technologies in Clinical Diagnostics: Next Generation Sequencing
This course is available on FutureLearn and developed by St George's University of London.
This postgraduate-level course will help you understand these new and established genetic technologies, and their application to clinical practice.
Scientific topics: Rare diseases
Keywords: Rare Diseases & Research
Resource type: e-learning
Genomic Technologies in Clinical Diagnostics: Next Generation Sequencing
https://www.futurelearn.com/courses/next-generation-sequencing
http://tess.elixir-uk.org/materials/genomic-technologies-in-clinical-diagnostics-next-generation-sequencing
This course is available on FutureLearn and developed by St George's University of London.
This postgraduate-level course will help you understand these new and established genetic technologies, and their application to clinical practice.
Rare diseases
Rare Diseases & Research
postgrad
Scientists
Healthcare
Genomic Technologies in Clinical Diagnostics: Molecular Techniques
This course is available on FutureLearn and developed by St George’s, University of London.
This postgraduate-level course, in combination with Genomic Technologies in Clinical Diagnostics: Next Generation Sequencing Technologies, will help you understand these new and established genetic...
Scientific topics: Rare diseases
Keywords: Rare Diseases & Research
Resource type: e-learning
Genomic Technologies in Clinical Diagnostics: Molecular Techniques
https://www.futurelearn.com/courses/molecular-techniques
http://tess.elixir-uk.org/materials/genomic-technologies-in-clinical-diagnostics-molecular-techniques
This course is available on FutureLearn and developed by St George’s, University of London.
This postgraduate-level course, in combination with Genomic Technologies in Clinical Diagnostics: Next Generation Sequencing Technologies, will help you understand these new and established genetic technologies, and their application to clinical practice. This course focuses on molecular techniques.
Rare diseases
Rare Diseases & Research
Scientists
healthcare professionals
Genetics education for primary care resources from the Gen-Equip project
Gen-Equip project is a project combining education, primary care and genetics. Its aim is to enable health professionals who are working in primary care to update their knowledge and skills in genetics. The aims is the long-term outcome of improvement in care of patients with genetic conditions...
Scientific topics: Rare diseases
Keywords: Rare Diseases & Research
Resource type: Documentation, Video, Training materials, online modules, e-learning
Genetics education for primary care resources from the Gen-Equip project
https://www.primarycaregenetics.org/?page_id=109&lang=en
http://tess.elixir-uk.org/materials/genetics-education-for-primary-care-resources
Gen-Equip project is a project combining education, primary care and genetics. Its aim is to enable health professionals who are working in primary care to update their knowledge and skills in genetics. The aims is the long-term outcome of improvement in care of patients with genetic conditions or concerns. They offer genetics education free of charge to those who want continuing medical or professional education in genetics.
Rare diseases
Rare Diseases & Research
Primary care doctors
health professionals
EATRIS Transmed Academy - course on translational medicine
e-learning platform which hosts online courses as well as recordings of webinar series.
Scientific topics: Rare diseases
Keywords: Rare Diseases & Research
Resource type: e-learning, Webinar
EATRIS Transmed Academy - course on translational medicine
https://eatris.eu/services/education/
http://tess.elixir-uk.org/materials/eatris-transmed-academy
e-learning platform which hosts online courses as well as recordings of webinar series.
Rare diseases
Rare Diseases & Research
PhD Students
healthcare professionals
postdocs
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://www.eupati.eu/category/webinar/
http://tess.elixir-uk.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://www.eupati.eu/eupati-training-course/
http://tess.elixir-uk.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://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
Alkaptonuria online course
Royal College of General Practitioners webinar on Alkaptonuria – "Black Bone Disease"
Scientific topics: Rare diseases
Keywords: Rare Diseases & Research
Resource type: Webinar, e-learning
Alkaptonuria online course
https://elearning.rcgp.org.uk/course/search.php?search=Alkaptonuria+–+%22Black+Bone+Disease%22
http://tess.elixir-uk.org/materials/alkaptonuria-resources
Royal College of General Practitioners webinar on Alkaptonuria – "Black Bone Disease"
Rare diseases
Rare Diseases & Research
General Physicians
healthcare professionals
Granulomatosis with polyangiitis screencast
Royal College of General Practitioners webinars on Granulomatosis with polyangiitis (GPA)
Scientific topics: Rare diseases
Keywords: Rare Diseases & Research
Resource type: Video, e-learning
Granulomatosis with polyangiitis screencast
https://elearning.rcgp.org.uk/course/search.php?search=Granulomatosis+with+polyangiitis+%28GPA%29
http://tess.elixir-uk.org/materials/granulomatosis-with-polyangiitis-resources
Royal College of General Practitioners webinars on Granulomatosis with polyangiitis (GPA)
Rare diseases
Rare Diseases & Research
General Physicians
Medics4RareDiseases (M4RD) video library
e-learning for medical students and doctors about the fundamentals of rare diseases
Scientific topics: Rare diseases
Keywords: Rare Diseases & Research
Resource type: e-learning
Medics4RareDiseases (M4RD) video library
https://www.m4rd.org/video-library/
http://tess.elixir-uk.org/materials/medics4rarediseases-m4rd-video-library
e-learning for medical students and doctors about the fundamentals of rare diseases
Rare diseases
Rare Diseases & Research
healthcare professionals
General Physicians
medical students
Integrated DEsign and AnaLysis of clinical trials in small population group (IDeAl) resources
Webinar Series on Integrated DEsign and AnaLysis of small population group trials
Scientific topics: Rare diseases
Keywords: Rare Diseases & Research
Resource type: e-learning, Webinar
Integrated DEsign and AnaLysis of clinical trials in small population group (IDeAl) resources
https://www.ideal.rwth-aachen.de/?page_id=1732
http://tess.elixir-uk.org/materials/integrated-design-and-analysis-of-clinical-trials-in-small-population-group-ideal-resources
Webinar Series on Integrated DEsign and AnaLysis of small population group trials
Rare diseases
Rare Diseases & Research
Webinars on rare neurological diseases (ERN-RND)
Rare neurological diseases webinars
Scientific topics: Rare diseases
Keywords: Rare Diseases & Research
Resource type: Webinar, e-learning
Webinars on rare neurological diseases (ERN-RND)
http://www.ern-rnd.eu/education-training/webinars/
http://tess.elixir-uk.org/materials/ern-rnd-webinars-ec014ea5-fa57-4211-9160-1da47d7ce06f
Rare neurological diseases webinars
Rare diseases
Rare Diseases & Research
Neurological
Paediatricians
healthcare professionals
Fellows and Residents
health professionals
Webinars on rare neuromuscular diseases (EURO-NMD)
Rare neuromuscular diseases webinars
Scientific topics: Rare diseases
Keywords: Rare Diseases & Research
Resource type: Webinar, e-learning
Webinars on rare neuromuscular diseases (EURO-NMD)
https://ern-euro-nmd.eu/webinars/
http://tess.elixir-uk.org/materials/ern-rnd-webinars
Rare neuromuscular diseases webinars
Rare diseases
Rare Diseases & Research
healthcare professionals
Neurologists
health professionals
RD-Connect Webinars
Three informative webinars for those researchers involved in ERNs
Scientific topics: Rare diseases
Keywords: Rare Diseases & Research
Resource type: Webinar, e-learning
RD-Connect Webinars
https://ern-euro-nmd.eu/rd-connect-webinars/
http://tess.elixir-uk.org/materials/euro-nmd-and-rd-connect-webinars
Three informative webinars for those researchers involved in ERNs
Rare diseases
Rare Diseases & Research
Transplantchild Webinars (ERN TransplantChild)
E-learning webinars on various pediatric transplantation items
Scientific topics: Rare diseases
Keywords: Rare Diseases & Research
Resource type: Webinar, e-learning
Transplantchild Webinars (ERN TransplantChild)
https://www.transplantchild.eu/webinars/
http://tess.elixir-uk.org/materials/transplantchild-webinars-ern-transplantchild
E-learning webinars on various pediatric transplantation items
Rare diseases
Rare Diseases & Research
European training programme in pharmacovigilance and pharmacoepidemiology (EU2P)
Innovative web-based education & training offer in Pharmacovigilance and Pharmacoepidemiology
Scientific topics: Rare diseases
Keywords: Rare Diseases & Research
Resource type: e-learning
European training programme in pharmacovigilance and pharmacoepidemiology (EU2P)
https://www.eu2p.org/
http://tess.elixir-uk.org/materials/european-training-programme-in-pharmacovigilance-and-pharmacoepidemiology-eu2p
Innovative web-based education & training offer in Pharmacovigilance and Pharmacoepidemiology
Rare diseases
Rare Diseases & Research