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NBIA Alliance News

European Conference on Rare Diseases & Orphan Products

ECRD

NBIA Alliance members will present a poster on TIRCON and the NBIA Alliance at the European Conference on Rare Diseases & Orphan Products in Berlin. The conference is from May 8-10 and the poster will be presented on Friday, May 9.

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Hoffnungsbaum e.V. 7th NBIA Family Conference

Hoffnungsbaum e.V. 7th NBIA Family Conference

NBIA Alliance partner Hoffnungsbaum e.V. will hold their family conference in Hohenroda, Germany, May 1-4, 2014.

This conference will bring together NBIA families, clinicians and researchers.

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ENACH Asociación raising NBIA awareness in Spain

ENACH Asociación

Our sister group in Spain received their non-profit status in April, 2013 and has been working hard to promote NBIA awareness in their country. In May they signed an agreement of cooperation with The Centre for Biomedical Network Research on Rare Diseases (CIBERER), which is one of nine public consortiums set up to coordinate and foster research into rare diseases in Spain.

And in Barcelona in September, Antonio López, from ENACH, facilitated a meeting with Dr. Susan Hayflick, Chair of the Scientific Advisory Board of the NBIA Alliance, Dr. Manju Kurian, from the Institute of Child Health in London, and Drs. Mercedes Serrano, Belén Pérez, Alejandra Darling, and technician Begoña Nafría, all CIBERER members affiliated with Hospital San Joan de Deu in Barcelona, Spain.

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Newest Member of Alliance raises funds for NBIA research

Ijzersterk NBIA

Ijzersterk NBIA joined the NBIA Alliance in October, 2012 and has been busy promoting NBIA awareness in the Netherlands. Friends and families have held several fundraisers, with the latest held on May 24-25 and raising approximately $30,000 for our Research Fund.

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