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.
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.
⌛️ 1h30m
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⌛️ 4h15m
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⌛️ 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.
⌛️ 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.
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.
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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.
⌛️ 2h30m
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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.
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For more information, please contact
Marta Campabadal, Open Academy eLearning and Outreach Coordinator
marta.campabadal@eurordis.org
EURORDIS website
