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...

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);...

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...

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...

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...

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...