-
The Council of European Rare Disease Federations provides a platform for the exchange of experiences and information across federations working for different diseases or group of diseases.
News
Aniridia Europe News
Aniridia Europe, the European Federation of Aniridia Associations, was formally established in September 2011, to promote research, exchange of knowledge and empower patients. In November 2012, Aniridia Europe’s Scientific Committee met for the first time in Mestre (Venice). five doctors … Read More
Posted in Article of the week, News
Tagged aniridia
Council of European Federations
The next workshop of the Council of European Federations (CEF), will take place October 26 &27 , 2017 in Paris For more information, please contact anja.helm@eurordis.org
Posted in Article of the week, News
Tagged CEF, council of european federations
Cross Border Health Care
January 19, the European Parliament voted in favour of the EU Directive on patients’ rights in cross-border healthcare, an important step forwards for all patients in Europe. Read More
Posted in Article of the week, News
Tagged Cross border health care, Europe, rare diseases
EDRIC Membership Meeting Sept 2012
EDRIC Membership Meeting Sept 2012 Organisations that are interested in becoming members of EDRIC are invited to an open meeting in Malmö, Sweden, on September 28 – 29 2012. This will be held at the Park Inn, Sjomansgatan 2, Malmö, … Read More
Posted in Article of the week, News
Tagged dysmlia
European LAM Federation to be presented in September
Launch of European LAM Federation Read More
Posted in Article of the week, News
First European Days of Albinism
The First European Days of Albinism will take place in Paris on Saturday 27th and Sunday 28th October 2012. This conference will gather representatives of European organizations of people with albinism, doctors and physicians specializing in fields related to albinism … Read More
Posted in Article of the week, News
Tagged albinism
International Porphyria Patient & Healthcare Professional Network to be discussed
Lunchtime Meeting on Promoting an Active International Porphyria Patient & Healthcare Professional Network Friday, May 17th Luzern At the P&P conference and the Porphyria Patient Day, Porphyria patient representatives are invited to meet as a group, to enhance the international … Read More
Posted in Article of the week, News
Tagged Porphyria
Launch of AHC FEDERATION OF EUROPE
on RARE DISEASE DAY 28th Feb 2013 The purpose of the AHC federation of Europe is to unite all AHC patient associations in Europe, to create a synergy and a critical mass in order to achieve the following objectives: Promote … Read More
Posted in Article of the week, News
Tagged alternating hemiplegia
Marfan Europe Networks meeting
The meeting includes the Annual Assembly and medical presentations about Marfans syndrome. The theme for the presentations will be foot and hip problems, spinal deformities, genetic related to Marfan syndrome , pain and pain relief. Read More
Posted in Article of the week, News
Tagged marfan
Meeting of the Council of European Federations
The 6th Workshop of the Council of European Federations takes place in Paris, Plateforme Maladies Rares, October 29 & 30. The workshop will discuss a number of topics, including the European Year of Rare Diseases , Best Practices, Registries and … Read More
Posted in News