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NBIA Alliance News

Spanish Researchers Receive Funding to Study NBIA Disorders

ENACH

ENACH Asociation, the NBIA organization in Spain, is working with Dr. Belén Pérez-Dueñas, a researcher with The Centre for Biomedical Network Research on Rare Diseases (CIBERER) Unit 703 at the Sant Joan de Déu Hospital in Barcelona. She is leading a project titled “Clinical evaluation and genetic characterization of Neurodegeneration with Brain Iron Accumulation disorders to be funded by TV3 Marathon in Spain.

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Canadian Group Joins NBIA Alliance

NBIA Disorders Association Canada

NBIA Canada has joined the NBIA Alliance. They are a newly formed group, led by Michelle Sheppard-Whalen. Michelle’s son Landon was diagnosed with FAHN in spring, 2014. They are reaching out to other Canadian NBIA families to connect and work together to increase research and awareness in Canada.

Contact email is nbiacanada@gmail.com . They hope to have a website soon.

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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