Dec 3, 2013

IPOPI Statement National Rare Diseases Plans

The International Patient Organisation for Primary Immunodeficiencies (IPOPI) has followed with great interest the national rare diseases plan implementation process by Member States following the adoption of Council Recommendation 2009/C 151/02 on an action in the field of rare diseases on 8 June 2009. Whilst some EU member states have implemented national rare diseases plans in line with the recommendation, others have only started the process and some have not started at all. IPOPI strongly believes that specific national strategies are needed to ensure that PID patients can benefit from early diagnosis and appropriate access to optimal care and has issued a position statement which can be accessed 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
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
IPOPI is a charity registered in the UK.
Registration No. 1058005