Rare Diseases: An International Public Health Priority
Patients and families affected by rare diseases live in all parts of the world. Yet vast disparities of access to information, diagnosis and support can be seen from country to country. International solidarity is required to leverage the efforts of those fighting to promote the cause of rare diseases and to address the needs of people living with rare diseases.
Our advocacy activities
Today, more than half of new national policies, laws and regulations stem from EU policies, directives and regulations. Since Eurordis represents rare disease patients from all...
Working together on both sides of the Atlantic
In 2006, Eurordis initiated a comparative analysis of EU and US designated and marketed orphan drugs.
Compassionate access to orphan drugs in US
NORD, the National Organization for Rare Disorders in the US, has many programs of advocacy, education, and research. It also offers...
International Rare Disease Day
“Patients & Researchers: Partners for Life!” For this annual event hundreds of patient groups and their partners organise activities to raise awareness...
Rare Disease Day 2010
This year’s Rare Disease Day, on February 28th, drew more partners in more countries and better quality events than ever!
EURORDIS-NORD
Strategic Partnership agreement signed to bring European and US rare disease patient advocates closer together
First International South Caucasian Conference for Rare Diseases & Orphan Drugs
Two pioneering rare disease conferences in Armenia and Georgia
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