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12 materials found

Resource type: e-learning 

and

Target audience: Patient Advocates   or Health Care Professionals 


EJP RD MOOC "Diagnosing Rare Diseases: from the Clinic to Research and back"

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
-...

Scientific topics: Rare diseases

Keywords: Rare Diseases & Research

Resource type: e-learning

Eurordis Open Academy

Through the Open Academy, EURORDIS empowers patient advocates to have the confidence and knowledge needed to bring their expertise to discussions on health care, research and medicines development. EURORDIS alumni engage in these discussions as equal partners, side by side with policy makers,...

Scientific topics: Rare diseases

Keywords: Rare Diseases & Research, Rare Diseases

Resource type: course materials, e-learning

Educational webinars on rare and complex epilepsies (EpiCARE ERN)

EpiCARE ERN (European Reference Network for rare and complex epilepsies) has launched a series of educational webinars presented by experts. The webinars are free to join from anywhere in the world, pre-registration is required.
Topics are related to epilepsy diagnostics and treatment and...

Scientific topics: Rare diseases

Keywords: Rare Diseases & Research

Resource type: Webinar, e-learning

Webinars from the European Reference Network in Rare Hematological Diseases (EuroBloodNet)

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

Educational videos on rare and low prevalence complex diseases of the heart (ERN GUARD-Heart)

ERN GUARD-Heart (European Reference Network for Rare and Low Prevalence Complex Diseases of the Heart) propose educational videos for experts on the following topics:
- CPVT: Diagnosis and Risk; Treatment; ICD therapy
- HCM: Definition, etiology and diagnostic work-up
- Sudden cardiac death:...

Scientific topics: Rare diseases

Keywords: Rare Diseases & Research

Resource type: Video, e-learning

Webinars on Hereditary metabolic diseases (MetabERN)

MetabERN (rare inherited metabolic disease) finds education one of its most important goals. This includes both the education and specialized training of professionals involved in metabolic patient care, and patient education.
Webinars are broadcasted and available online. Previous webinars...

Scientific topics: Rare diseases

Keywords: Rare Diseases & Research

Resource type: Webinar, e-learning

Educational webinars on Rare and Complex Connective Tissue and Musculoskeletal Diseases (ERN ReCONNET)

ERN ReCONNET is the European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases. These include hereditary conditions, and systemic autoimmune diseases such as systemic sclerosis, mixed connective tissue diseases, inflammatory idiopathic myopathies,...

Scientific topics: Rare diseases

Keywords: Rare Diseases & Research

Resource type: Webinar, Video, e-learning

Webinars and Pills of knowledge Videos on rare vascular diseases (VASCERN)

VASCERN propose short single video lessons (of approximately 3-5 minutes long) in which an expert talks about a specific topic that has been selected.
Topics developed are covering: Pediatric and Primary Lymphedema ; Medium-Sized Arteries (MSA); Heritable Thoracic Aortic Diseases (HTAD);...

Scientific topics: Rare diseases

Keywords: Rare Diseases & Research

Resource type: e-learning, Video

Whole Genome Sequencing: Decoding the Language of Life and Health

Whole genome sequencing is a relatively new technology that allows us to ‘read’ a person’s or organism’s entire genetic code. But how does it work and what does it mean for all of us? How do scientists and clinicians begin to make sense of the vast amount of information that whole genome...

Scientific topics: Rare diseases

Keywords: Rare Diseases & Research

Resource type: e-learning

Rheumatic and musculoskeletal diseases online resources from EULAR (European League Against Rheumatism)

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

Patient-Centered Outcomes Research Institute (PCORI) Training : A Program for Rare Disease Patient Advocates

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

Findacure's e-learning resources on rare diseases

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