Feb 17, 2014

4th PID Forum on Cross-border Healthcare and PIDs

IPOPI held its 4th PID Forum on Cross-border Healthcare and PIDs on 29th of January in the European Parliament in Brussels, Belgium. This Forum looked into the potential benefits the Directive 24/2011/EU could bring to patients with PIDs and was hosted by Member of the European Parliament Emer Costello (S&D, Ireland).
Experts representing patients, academics, physicians and industry gathered with Members of the European Parliament and the European Commission to discuss the need for Member States to fully implement the legislative text and the benefits for PID patients. Annika Novack, from the European Commission, explained in depth the importance of European Reference Networks and of the Contact Points in the dissemination of information to patients in seek for diagnosis, treatment or care. Professor Bobby Gaspar provided concrete examples of the benefit of cross-border healthcare in the treatment of severe forms of PIDs, such as SCID. Johan Prevot, Executive Director of IPOPI, and Yvonne Rooney, member of the Irish Primary Immunodeficiency Organisation (IPIA), outlined the expectations and views of PID patients on this legislation.
The participants of the Forum called for Member States to involve patients and their representatives when implementing the Directive to ensure that patients’ needs and expertise are taken into account.
The full report of the meeting and the recommendations emanating from the event are 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