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NBIA Alliance News

European grant will help researchers test drugs and supplements for MPAN

With a grant from our sister organizations in Switzerland and the Netherlands, researchers in Germany are testing potential treatments for MPAN, a form of NBIA.

The scientists plan to use the grant of 50,000 euros from NBIA Suisse and Stichting Ijzjersterkthe to test about 200 drugs and nutritional supplements that might help MPAN patients. They will screen those compounds in a fruit fly model of MPAN.

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Italian lab receives grant, drug access in quest to uncover PKAN treatments

- By Francesca Sofia, PhD*

A lab in Italy working on the role of coenzyme A in NBIA received a grant of 16,500 euros in June from the Italian Association for Neurodegeneration with Brain Iron Accumulation (AISNAF).

The funding, which could be renewed at the same amount, will enable the lab to continue its work on CoA for six months while waiting for larger grants to come in.

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NBIA Suisse joins NBIA Alliance

The NBIA Alliance, an informal umbrella organization for the lay advocacy groups, recently welcomed its newest member, NBIA Suisse from Switzerland. Set up in 2012, the alliance now has eight member organizations. In addition to the Swiss and U.S. groups, they are in Canada, France, Germany, Italy, the Netherlands and Spain.

The newest alliance member, NBIA Suisse, came on board in October, 2015. Fatemeh Mollet is the founder and has three nieces with a form of NBIA known as Mitochondrial-membrane Protein-Associated Neurodegeneration, or MPAN.

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First family and professional conference for NBIA disorders to be held in Barcelona, Spain, November 13-14, 2015

ENACH Association

The first family and professional conference for NBIA disorders will be held in Barcelona, Spain, November 13-14, 2015.

This meeting will include the participation of renowned international researchers discussing their work. Antonio Lopez, of Enach Association, the Spanish NBIA patient organization, will be presenting on how he started the organization for NBIA disorders in Spain. Attendance is free and includes catering of food served during the two day meeting. Pre-registration is required. For more information, please contact enachasociacion@hotmail.com.


Italian NBIA organization holding first family conference October 10-11, 2015

AISNAF-Associazione Italiana Sindromi Neurodegenerative Da Accumulo Di Ferro

The Associazione Italiana Sindromi Neurodegenerative Da Accumulo Di Ferro (AISNAF) is holding their first family meeting at the Green Park Hotel in Bologna, Italy, October 10-11, 2015. Researchers, including Dr. Susan Hayflick, Director of the NBIA Disorders Association Scientific & Medical Advisory Board, will be discussing their research, and clinicians familiar with NBIA disorders will also be participating and sharing their knowledge.

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Spanish Researchers Receive Funding to Study NBIA Disorders


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 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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