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Search Results for: enfermedades raras
Total Results: 20
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 […]
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
Busy Agenda for 2015 Membership Meeting in Madrid
The 2015 EURORDIS Membership Meeting (EMM) will take place in Madrid from 29 - 30 May. Organised in a different European city each year, the EMM provides 200 attendees, made up of mainly patient organisation representatives, plus healthcare professionals and policymakers, with the opportunity to network, share best practices and take part in workshops. The two day event, organised in collaboration with FEDER, the Spanish National Alliance for Rare Diseases, will begin with the General Assembly, during which the EURORDIS 2015 – 2020 Strategy will be presented. At this stage, four directors will also be elected to the EURORDIS Board of Directors. The Meeting will then be broken down into several plenary sessions, the first of which will focus on European Reference Networks (ERNs) and will address issues such as how to set up and organise ERNs, as well as how to involve patients in their development. Next, four breakout sessions will take place, during which patient representatives will discuss the organisation of ERNs by therapeutic areas. The Plenary Session on Saturday morning will look at outcomes of national conferences and how existing or promising positive options in national plans or strategies can inspire other countries.
Испанское правительство объявило 2013 год Годом больных редкими заболеваниями
На состоявшемся в конце октября в Тотане (Мурсия, Испания) 5-м Национальном конгрессе по редким заболеваниям, организованном Испанской национальной ассоциацией по редким заболеваниям (FEDER) совместно с генетической ассоциацией D’ Genes Association, испанский министр здравоохранения, социальных услуг и равноправия Ана Мато (Ana Mato) объявила 2013 год Годом больных редкими заболеваниями Эта инициатива направлена на повышение информированности общества о редких заболеваниях и привлечение его внимания к проблемам пациентов и их семей. Кроме того, ее реализация призвана пробудить интерес со стороны ученых, медиков и представителей фармацевтической промышленности к разработке новых препаратов и изучению природы редких заболеваний. Выступая перед участниками Конгресса, министр рассказала о планах по разработке скоординированной стратегии, направленной на поиски всестороннего решения проблемы редких заболеваний на основе междисциплинарного подхода , охватывающего ее медицинские, социальные и научные аспекты. Национальная стратегия будет реализовываться в тесном взаимодействии с автономными сообществами. Решаемые в ее рамках задачи включают профилактику и раннюю диагностику редких заболеваний, повышение качества медицинского обслуживания пациентов и внедрение передовых методов лечения.