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Eurordis - Rare Disease Europe

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Our online courses have been developed with subject-area specialists, such as researchers and patient experts, and are regularly updated for the best learning experience and the latest information on all topic areas.

Click below on your topic areas of interest to see the related online courses, links to more information and additional related resources.

 

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Research leads to a better understanding of rare diseases, quicker and more accurate diagnosis, innovative treatments and cures, and better health care. It represents hope for the 30 million people living with a rare disease in Europe and their families.

More information is on the EURORDIS website.

 

Free

Fundamentals of statistics in clinical trials

⌛️ 3h

Free

Registries: how can you work with existing registries or set up a registry?

⌛️ 1h30m

Free

Introduction to the European and international research landscape

⌛️2h

Free

Medical Research and Development

⌛️ 5h45m

A diagnosis can serve as the key to unlocking access to appropriate medical and social care. Getting an accurate diagnosis even when there is no treatment provides the opportunity for people living with a rare disease and their families to plan their care and future.

More information is on the EURORDIS website

 

Free
Unit 2: Clinical Diagnosis

Genetic research to clinical diagnosis of Rare Diseases

⌛️ 3h45m

Holistic care is care that encompasses the 360° spectrum of the health, social and everyday needs of people living with a rare disease and their families.

People living with a rare disease need follow-up care and support from different health professionals, often from several different medical specialists, as well as from social workers and other social and local service providers. 

More information is on the EURORDIS website

 

Finding the right expert for a rare disease and accessing care remains a challenge for many of the 30 million people living with a rare disease in Europe. Often the only doctor who has expertise in their disease is located in a different country.

To address these challenges, the EU created the European Reference Networks (ERNs). An ERN is a network of healthcare providers that connects doctors and researchers virtually across borders, so that expertise travels rather than the patient.

More information is on the EURORDIS website.

Once a child or adult is diagnosed with a rare disease, their next logical step is to search for a treatment.

Treatments provide relief to people living with a rare disease and their families. A treatment can slow down the progression of a disease, treat the symptoms or cure the disease. They ease the reality of living with a rare disease every day.

More information is on the EURORDIS website.

 

Free

The European Medicines Agency (EMA)

⌛️ 4h45

Free

Market access & Health Technology Assessment

⌛️ 1h30

Free

Benefit-risk assessment and pharmacovigilance

⌛️ 2h 45m

Free

Medical Regulatory Framework and Procedures

⌛️ 2h30m

Advocacy contributes to bringing about impactful change for people living with a rare disease by ensuring national, European and international policies are created and developed taking into account the needs of our community – 30 million people living with a rare disease in Europe, 300 million people around the world, plus their families, carers and healthcare providers.

More information is on the EURORDIS website

 

Free

Introduction to genetics and genomics

⌛️ 2h

Free

Survey design for rare disease patient organisations

⌛️ 5h

Free

Establishing an international cooperation

⌛️ 2h30m

Free
United Nations image

International advocacy for rare diseases

⌛️ 2h30m

Free

Ordinary Legislative Procedure – How are decisions taken by the EU?

⌛️ 1h30

Free

Introduction to the European Union Institutions

⌛️ 2h

Sharing health data to advance scientific research and improve clinical practice is of particular importance to the 30 million people living with a rare disease in Europe, where knowledge and expertise are limited, patient populations are geographically dispersed, and health data is scattered.

 

 

Free
silhouette-business-people-discussion-meeting-cityscape-team-concept

Recommendations on the required capabilities for patient engagement

⌛️ 2h

Free
person divides with palm a red and green figures of people

Conflict of interest in patient engagement

⌛️ 2h

The Open Academy eLearning is funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or HaDEA. Neither the European Union nor the granting authority can be held responsible for them.

 

 

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Contact the Open Academy team

For more information, please contact

Marta Campabadal, Open Academy eLearning and Outreach Coordinator