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Scientific topics: Rare diseases 

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" 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 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) 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) 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 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) 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) 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) 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) 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://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) 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) 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 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 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 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 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 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 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 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 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) 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 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 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 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 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://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) 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 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) 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) 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