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Parliamentary questions
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17 March 2016
E-002254-16
Question for written answer E-002254-16
to the Commission
Rule 130
José Inácio Faria (ALDE) , Carlos Zorrinho (S&D)

 Subject:  Disseminating principles of care for primary immunodeficiencies
 Answer in writing 

Primary immunodeficiencies (PIDs) are a group of more than 280 chronic rare diseases which cause the patient’s immune system not to function adequately or at all. In order to ensure adequate care for patients, targeted screening, diagnosis and treatment principles are required across the EU(1).

Principles of care for PIDs, prepared by the leading international patient organisation in the field(2) in collaboration with an international multidisciplinary team of experts, have been published in Frontiers in Immunology. These principles set out key policies and actions that need to be put in place by Member States, including specialised centres, patient organisations and national registries.

Is the Commission aware of this important document and its recommendations?

Will the Commission take into account the need for such a document in order to provide guidance to the Member States, and consider endorsing the principles of care for PIDs as a useful tool in implementing adequate care for PID patients across the EU?

Will future action in the field of rare diseases take into account the principles of care developed by leading experts in the field in respect of such diseases, including PIDs?

(1)Chapel, H. et al., ‘Primary immune deficiencies — principles of care’, Frontiers in Immunology,15 December 2014, DOI: 10.3389/fimmu.2014.00627.
(2)International Patient Organisation for Primary Immunodeficiencies (IPOPI).

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