May 28, 2015

Rare Diseases International launched today

Over 60 patient representatives from 30 countries are gathering this afternoon in Madrid, Spain, for the inauguration of Rare Diseases International (RDI) and to adopt a joint declaration to advocate for rare diseases as an international public health priority.

This Eurordis initiative represents patients and families of all nationalities across all rare diseases and its aim is to be the voice of all people living with a rare disease and to give visibility to rare diseases in the global health agenda.
Johan Prevot, IPOPI’s Executive Director is also taking part in the launch meeting and will present IPOPI’s advocacy work at the international level.
The preliminary phase of RDI has been steered by EURORDIS and national rare disease alliances from the US (NORD), Canada (CORD), Japan (JPA), China (CORD), India (I-ORD), the Ibero-American pan-regional alliance (ALIBER) and the International Federation for Epidermolysis Bullosa (DEBRA International).

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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