About Us
Search Results for: enfermedades raras
Total Results: 26
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 […]
Social Policy Action Group (SPAG)
The Social Policy Action Group (SPAG) supports EURORDIS’ work to shape policies and practices that improve the access of people living with a rare disease and their families to holistic care, and the guarantee of their social and human rights. The SPAG is composed of 20 volunteers, representing 13 European countries and a diversity of […]
National plan for rare diseases: Spain
Please find documents on/ relevant to the national strategy for rare diseases and EUROPLAN conferences in Spain listed below: Spain_RD National Srategy_2009_Spanish Spain_RD National Srategy_2009_English Spain_RD National Srategy_Update_2014_Spanish EUROPLAN_2010_Spain National Conference_Report_English EUROPLAN_2014_Spain National Conference_Report_English EUROPLAN_2017_Spain National Conference_Report_English National contact:FEDER – Federación Española de Enfermedades Raraswww.enfermedades-raras.org
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 […]
EURORDIS Membership Meeting (EMM) 2014 Berlin
The 2014 EURORDIS Membership Meeting is being held in Berlin, Germany, in conjunction with the European Conference on Rare Diseases & Orphan Products (ECRD 2014 Berlin) from 8-10 May. Organised in a different European city each year, the EURORDIS Membership Meeting provides a unique occasion for EURORDIS Members to gather and exchange experiences and ideas. The Meeting commences with the EURORDIS General Assembly – an opportunity for full members to have their say in the governance of EURORDIS and to weigh in on important topics. The General Assembly will put the spotlight on EURORDIS Volunteers this year. Volunteers are playing an increasingly active and vital role in EURORDIS and their valuable contribution merits recognition and visibility. A new EURORDIS website section highlighting our Volunteers is underway and the Charter of the EURORDIS Volunteers will be presented. Other topics on the agenda at this year’s Membership Meeting include the popular Learning from Each Other sessions, designed to offer patient advocates the opportunity to meet, discuss and exchange best practices. Key presentations are followed by a discussion period during which all participants are encouraged to share their experiences. This year’s sessions will explore Crowdfunding, Education and employment initiatives, Surveys as advocacy tools, and Online patient forum RareConnect.
Bilbao Conference on Rare Diseases and the European Reference Networks
The conference on Rare Diseases and European Reference Networks will be organised under the auspices of the Spanish Presidency of the EU Council,