Jan 24, 2013

EU Commission Consultation on Chronic Diseases - report of contributions

The European Commission recently published a report on the contributions received for the consultation on chronic diseases in which IPOPI took part.
The aim of the Consultation was to gather stakeholders information and provide a basis for a potential EU policy on chronic diseases. Later in 2013 a Joint Action on Chronic Diseases will be carried out by the Commission in cooperation with one or more Member States or with competent authorities.

Several key points from the Position Statement issued by IPOPI highlighting the priorities of the primary immmunodeficiencies community were included in the report. These included among others: the need for additional EU action for treatable inherited disorders and to rare diseases (page 25), the importance of specialised reference centres
(page 38), the need for development of holistic HTAs and health economic evaluation targets including clinical and societal impacts (page 41), EU Member States engage with stakeholders more effectively in addressing newborn
screening (page 85). IPOPI will closely monitor further developments and advocate for the inclusion of rare diseases such as primary immunodeficiencies within the scope of future EU policy and actions.

The full report is available here

World PI Week
IPOPI would be grateful for any support to the important work for primary immunodeficiencies.

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Executive Director: Johan Prevot
Email: johan@ipopi.org
Tel/Fax: +351 21 407 5720
UK office
Firside Main Road Downderry
Cornwall PL11 3LE
United Kingdom

Tel: +44 1503 250 668
Fax: +44 1503 250 961
E-mail: info@ipopi.org
IPOPI is a charity registered in the UK.
Registration No. 1058005