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Coming next: Rare Disease Day
February 15th 2012
February 29, 2012 marks the fifth international Rare Disease Day coordinated by EURORDIS and organised with rare disease national alliances in 25 European countries. On this day hundreds of patient organisations from more than 40 countries worldwide are organising awareness-raising activities converging around the slogan “Rare but strong together”.
Combination of EMA-binding and AGLT tests shows the highest diagnostic power for hereditary spherocytosis
January 24th 2012
In hereditary spherocytosis, as in many other rare diseases, one of the challenges is developing a reliable diagnostic tool. The team from the Foundation IRCCS Ca' Granda Ospedale Maggiore Policlinico (Milan), led by Prof. Alberto Zanella, has undergone a performance comparison of several tests to determine which of them is the most useful diagnostic method.
Collaborate with the ENERCA questionnaires for professionals
December 22nd 2011
ENERCA is a network that needs your collaboration. One of the many ways to collaborate with this project is by answering the questionnaires for professionals you will find in the Activities section of our website.
Presentations from the ENERCA 4th European Symposium on Rare Anaemias now available
December 14th 2011
The most influencing professionals around Europe joined their efforts and knowledge with patients associations in the fight against rare anaemias.
A work describing the genetic background and mechanisms of an extremely rare form of hereditary stomatocytosis
November 3rd 2011
The study describes the genetic background of two cases of stomatin-deficient cryohydrocytosis, a recently described and very rare form of hereditary stomatocytosis. Very few teams work on this kind of disease in Europe. This is why it is important that networks of experts, like ENERCA, join their efforts and make their results accessible to the medical and scientific community.
Agenda
Rare Disease Day: Research means advancement
February 28th 2012
Madrid, Spain
In this conference researchers from CIBERER and patients will explain their collaboration and the advances reached. This social act commemorates the Rare Disease Day. Pre-registration is required at congreso@ciberer.es or at the telephone +34 96 339 47 89 / +34 672 495 444.
Centro de Investigación Biomédica en Red de Enfermedades Raras (CIBERER)
First EURORDIS fundraising Gala Dinner
Frebruary 29th 2012
Brussels, Belgium
The net proceeds collected from the Gala will support community building initiatives for rare disease patients and families in Europe, help to raise public awareness about rare diseases and stimulate research by assisting patients to launch or get involved in research projects.
European Organisation for Rare Diseases (EURORDIS)
Rare Diseases a model of EU Solidarity: “Rare but Strong Together”
February 29th 2012
Brussels, Belgium
The meeting aims at demonstrating the value of the EU-wide approach in the area of rare diseases – show it has a positive impact on the health of all EU citizens and can generate a good return to investment, in addition to being a model that is being emulated outside of the EU.
European Organisation for Rare Diseases (EURORDIS)
International Rare Disease Day
February 29th 2012
Rare Disease Day is an annual, awareness-raising event co-ordinated by EURORDIS at the international level and the National Alliances of Patient Organisations at the national level
European Organisation for Rare Diseases (EURORDIS)
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Enerca is a project in the Health Programme 2008 of the European Commission.