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NBIA Alliance News

NBIA Alliance Call for Applications

NBIA Alliance

The NBIA Alliance is accepting applications for travel grants for early career researchers to the Third Joint Symposium On Neurocanthocytosis and Neurodegeneration with Brain Iron Accumulation.

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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. held their family conference in Hohenroda, Germany, May 1-4, 2014.

With a total of 76 participants from 5 countries, including 17 affected families as well as conference volunteers, speakers, physicians and researchers, the conference was a great success.

The conference theme was “Living with NBIA – a stony way” and focused on social issues. There were sessions on the rights due to disabled individuals and their families according to German social legislation and on craniosacral therapy as a relaxing therapeutic approach.

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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

Stichting Ijzersterk  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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