European Council of Medical Orders

Déjeuner-débat de la FEAMH au Parlement européen

The European Federation of Associations of Patients with Haemochromatosis (EFAPH) organized the 12th September 2011 a lunch-debate at the European Parliament with the active support of the parliamentary Committee in charge of Public Health. As a result, a Written Question from the MEPs to the European Commission advocates the systematic testing of iron for men around the age of 40 and for women around 50. Another fall-out is the ambitious project for EFAPH to generalize local or regional networks of patients and medical staff, and to collect systematically the data thereof.

In its answer, the European Commission explains that “due to the very high number of diseases, [it] does not have the means to address each individual rare disease with specific actions. This is why the Commission seeks to provide solutions for rare diseases as a whole and does not intend to develop specific guidelines on early detection and diagnosis of hereditary haemochromatosis”. The Commission has however been supporting research in this area through its Framework Programme for Research and has proposed to the Parliament and the Council to give due consideration to genetic diseases in the forthcoming Horizon 2020 Strategy.

Access the parliamentary question and the answer given by the European Commission.