Eurordis - Rare Disease Europe

Search Results for: enfermedades raras

Total Results: 22

Joint Statement on UHC at the United Nations

Formal statement on behalf of the NGO Committee for Rare Diseases (CONGO), EURORDIS-Rare Diseases Europe (ECOSOC “EURORDIS European organisation for Rare Diseases”), Agrenska (ECOSOC), Rare Diseases International (RDI) and the Federación Española de Enfermedades Raras (FEDER) In this statement, presented at the high-level meeting on Universal Health Coverage (UHC) at the United Nations Headquarters in New […]

Engaging the United Nations System and Member States to Achieve high-level meeting on universal health coverage for PLWRD: A Blueprint for Leaving No One Behind

Thursday, 21 September, 2023, from 7:15 pm – 8:30 pm CET Rare Diseases International (RDI), the Permanent Mission of Spain to the United Nations, and the Permanent Mission of Sweden to the United Nations are organizing the hybrid event “Engaging the UN System and Member States to Achieve UHC for PLWRD: A Blueprint for Leaving No One Behind” on Thursday, 21 September, […]

EURORDIS welcomes Spanish EU Council Presidency’s commitment to prioritising the approach to rare diseases

EURORDIS responds to Spain’s priorities for the coming Spanish Presidency of the EU Council.

Award to EURORDIS-Rare Diseases Europe for driving a European Action Plan on rare diseases

EURORDIS awarded for its work by FEDER, the Spanish National Alliance for Rare Diseases.

Open letter: ECRD partner organisations call on the European Commission for a new European strategy on rare diseases

EURORDIS, alongside 57 partner organisations of the European Conference on Rare Diseases and Orphan Products 2022, co-signed a letter to call on the European Commission to take forward the conclusions of the conference for a European Action Plan on Rare Diseases. 58 organisations – representing patient organisations, learned societies, ERN coordinating centres, health and research […]

Alba Ancochea

FEDER – Federacion Española de Enfermedades Raras Alba Ancochea joined the EURORDIS Board of Directors in May 2017. Alba has a decade of experience and commitment in implementing and planning policies, programs and socio-health projects in the field of rare diseases. Since 2009, she has been actively involved with the Spanish Federation of Rare Diseases […]

Assembleia Geral da EURORDIS adota a Carta dos Voluntários da EURORDIS no seu Encontro de Associados anual

Os associados da EURORDIS adotaram o Relatório de Atividades de 2013, o Relatório Financeiro de 2013 e o Plano de Trabalho para 2014, que incluiu o Plano de Ação para 2014 e o Orçamento para 2014, na Assembleia Geral anual que teve lugar a 8 de maio. A assembleia, que contou com 180 participantes, realizou-se durante o Encontro de Associados da EURORDIS (EAE) em Berlim, na Alemanha. A Assembleia Geral, que proporciona aos seus membros plenos uma oportunidade de dar a sua opinião na gestão da EURORDIS e decidir sobre tópicos importantes, incidiu sobre os diferentes Voluntários da EURORDIS,que desempenham uma função ativa e vital no sucesso da associação. Para dar o devido reconhecimento à contribuição importante dos Voluntários, criou-se uma nova secção do site: a Carta dos Voluntários da EURORDIS, que realça os valores fundamentais da associação, foi apresentada e adotada na Assembleia Geral.

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