viernes, 16 de diciembre de 2016

EURORDIS - La voz de los Pacientes con Enfermedades Raras en Europa

EURORDIS - La voz de los Pacientes con Enfermedades Raraas en Europa

Eurordis, Rare Diseases Europe
La voz de los Pacientes con
Enfermedades Raras en Europa

Reunión de Miembros de EURORDIS

Save the date: EURORDIS Membership Meeting 2017 Budapest

The next EURORDIS Membership Meeting (EMM 2017) will take place in Budapest, Hungary at the Danubius Hotel Helia from 19 - 20 May 2017.
The working language of the meeting will be English, with simultaneous translation of the Plenary Session on Friday into Hungarian.


Registration for this event opens January 2017. Please return to this page then for more information on how to register.
EURORDIS is once again offering patient fellowships for up to 40 patient advocates. The deadline for applications is 28 February 2017.

Soapbox session:

6 patient representatives will have the opportunity to present Innovative strategies, approaches, services or projects that could potentially be useful to other patient groups in a soapbox session on Saturday 20 May. If you are interested in participating, please email Each person will have 5 minutes to present (no slides will be allowed).

We encourage you to book your hotel rooms as soon as possible.
Danubius Hotel Helia
Kárpát utca 62-64., 1133 Budapest, Hungary,
Phone: +36-1-889-5800,
Hotel room rates:
Single room: 98,-EUR/ room /night
Double room: 98,-EUR/ room /night
Danube view: 10,-EUR/ room /night
  • The above prices are inclusive of buffet breakfast, WiFi internet access throughout the hotel, unlimited use of the Danubius Premier Fitness Club
  • Click here to book your room with the Eurordis EMM rate.
  • The hotel has wheelchair-adapted rooms. Please contact to book one of these rooms.
  • For directions from the airport to the hotel including estimated costs and phone number for a taxi service adapted for wheelchair users and for more hotel options, please download our Practical Information document.

Satelite Meetings

This 2-day event, is preceded by the following satellite meetings on May 18:

EURORDIS Board of Directors elections

Friday 19 May,  will begin with the EURORDIS Annual General Assembly, during which four directors will be elected to the Board of Directors.
If you represent a member organisation of EURORDIS (full members only) and would like to apply for a seat on the board, please contact before 26th April 2017.

We look forward to seeing you in Budapest!

Todos los años, la Reunión de Miembros de EURORDIS proporciona a más de 200 pacientes, organizaciones de pacientes, diseñadores de políticas la oportunidad de crear redes y talleres de creación de capacidades para mejorar la vida de los que padecen una enfermedad rara.
Los talleres entorno a la reunión de miembros de EURORDIS están diseñados para que los pacientes desarrollen el conocimiento y la capacidad de avanzar en políticas y servicios para los pacientes de enfermedades raras en su país y comunidades locales. La  Reunión de miembros de EURORDIS es una gran oportunidad para que los socios establezcan redes, compartan las mejores prácticas y aumenten el conocimiento de los temas inherentes a las organizaciones miembros y el colectivo de las enfermedades raras en el país de cada socio.  

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