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
-...

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,...

The European Reference Network on rare endocrine conditions (Endo-ERN) aims to improve access to high-quality healthcare for patients with rare hormonal disorders.

Various webinar on rare endocrine conditions are proposed :
- Update on congenital adrenal hyperplasia
- Prophylactic...

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...

The European Reference Network for Rare Kidney Diseases (ERKNet), the European Society for Paediatric Nephrology (ESPN) and the International Pediatric Nephrology Association (IPNA) have since January 2020 launched a set of webinars.

They take place monthly on Tuesdays 4 pm CET (except summer...

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'...

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...

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:...

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...

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,...

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);...

The course will give you an awareness of genomic technologies and the data they generate.
The course draws on the experience of experts in clinical genetics and education at St George’s, University of London, St George’s University Hospitals NHS Foundation Trust and the Genomics Education...

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...

This course focuses on genomic sequencing.
Topics covered:
- The changing landscape of genomics: From Sanger sequencing to Next Generation Sequencing
- Overview of Next Generation Sequencing platforms and their methodology
- Targeted resequencing
- Alignment, variant calling and...

This course focuses on molecular techniques. By the end, you will be able to demonstrate knowledge and applicability of the molecular principles behind:
- array comparative genomic hybridisation (array CGH);
- karyotyping;
- fluorescent in situ hybridisation (FISH);
- Southern blotting;
-...

GEN-EQUIP project combine education, primary care and genetics. Each module is based on a case and covers a different type of genetic condition you might see in primary care. Through its website, it offers genetics education free of charge to those who want continuing medical or professional...

Online course on the landscape of translational medicine
An online course for the next generation of translational scientists (PhDs, Postdocs and MDs) is touching upon key aspects of translational research and medicines development. You will learn more about target validation, predictive models,...

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...

Granulomatosis with polyangiitis (GPA - formerly known as Wegener’s granulomatosis) is a rare vasculitis which commonly presents with symptoms related to the respiratory tract. This ‘Five minutes to change your practice’ screencast discusses the presentation of GPA, when to consider it as a...

Medics4RareDiseases (M4RD) provides e-learning for medical students and doctors about the fundamentals of rare diseases : Communication Skills, Covid19, Diagnosis, General Practice, Endocrinology, Events, Genomics, M4RD, Reseaarch, The unusual suspects, Rare Diseases, Training.
Their ultimate...

IDeAl Webinar Series, included introduction by Ralf-Dieter Hilgers, randomisation, clinical trials, extrapoling doseresponse inforation, biomarker surrogate endpoints, design studies, design of pharmacogenetic, genetic factors influencing the response to the therapy, decision analysis... in small...

ERN-RND (European Reference Network for Rare Neurological Diseases (ERN- RND)) provides educational webinars on rare neurological and neuromuscular diseases - in collaboration with the European Reference Network for Rare Neuromuscular Diseases (EURO-NMD) and the European Academy of Neurology...

EURO-NMD provides educational webinars on a monthly basis to increase the knowledge around different specialist areas related to the neuromuscular field. Each webinar lasts approximately one hour with the opportunity for viewers to ask questions on the subject area. The recordings and slides will...

As part of a close working relationship between EURO-NMD (European Reference Network for the thematic grouping of rare neuromuscular diseases (NMDs)) and RD-Connect three informative webinars were organised for those researchers involved in ERNs :
1. Genomic analysis quick and easy: RD-Connect...

ERN TransplantChild is a European Reference Network (ERN) for Paediatric Transplantation.
These e-learning webinars focuses on various pediatric transplantation items.

Online training in pharmacovigilance and pharmacoepidemiology. Eu2P offers several types of courses to meet specific training needs : short course, certificate course, and master programme. Eu2P stands for "European programme in Pharmacovigilance and Pharmacoepidemiology".

eLearning course about the importance of good research data management (RDM).
The Danish National Forum for Data Management and the Danish Universities have developed the eLearning course “Research Data Management”. The course is divided into 3 independent modules : Introduction; FAIR...

3 online courses with academic credential to gain a deep insight into the potential of genomics in healthcare, and the clinical applications of molecular genetic techniques and next generation sequencing (NGS) technologies.
1. The Genomics Era: the Future of Genetics in Medicine
2. Genomic...

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.

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’...