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EURORDIS Elects New Board of Directors
Every year, EURORDIS holds its General Assembly, where our full members elect the Board of Directors. As we begin this new term, we would like to take a moment to welcome the four new members.
Daniel De Vicente
Daniel de Vicente has been a vocal member of the FEDER Board of Directors since 2020 and president of the Association of Patients with ASMD (Niemann-Pick B, A, A/B Acid Sphingomyelinase Deficiency) created in 2019. At the international level, he is a European expert of the EMA (European Medicines Agency) and Research Liaison Officer of […]
Rare disease helplines
People living with a rare disease are frequently faced with a critical lack of information and support. Upon hearing their diagnosis, their first point of contact is often the local patient organisation for their diseases. If a patient organisation does not exist in their area or cannot supply the correct, validated information, the patient is […]
Article: Share and protect our health data
EURORDIS announced results from the first multi-country survey on rare disease data sharing and protection, published in an article in the Orphanet Journal of Rare Diseases by EURORDIS and the School of Social Sciences of Cardiff University. (July 2019) English Share and protect our health data Spanish Share and protect our health data
Spain’s government declares 2013 the Spanish Year of Rare Diseases
The Spanish Minister of Health, Social Services and Equality, Ana Mato, declared 2013 the Spanish Year for Rare Diseases at the Fifth National Rare Disease Congress organised by the Spanish Rare Diseases Alliance (FEDER) and D’ Genes Association, at the end of October in Totana, Murcia in Spain.
Aniridia: Daniel’s life
LIVING WITH A RARE DISEASE Living up to your dreams Daniel Sanchez de Vega was diagnosed with Aniridia when he was one week old. His mother Rosa being affected too, the diagnosis was reached early. Aniridia, meaning “without iris”, is a rare genetic disorder characterised by the incomplete formation of the eye’s iris. Aniridia is […]