NBIA Alliance - Worldwide Partners for a Cure
The Alliance is an international umbrella organization for NBIA advocacy groups worldwide. the alliance started in January, 2012, in conjunction with the kick-off meeting of the European Union funded project TIRCON (Treat Iron-Related Childhood-Onset Neurodegeneration).
The Alliance members’ agreements comprise the following areas of cooperation:
While each country has their own legal entity, we share common goals in helping NBIA families coping with these rare disorders, promoting improved health care with access for all those affected and supporting NBIA research to find more effective treatments and ultimately cures for these disorders.
We are working together on a strategic plan for the future that we all endorse and will implement together.
We display the Alliance logo on our websites and in literature to show we are members of a worldwide collaboration.
We encourage the growth of NBIA organizations in other countries and strive to help newly developing groups by sharing our knowledge, and being a resource to help them flourish and join our Alliance.
We are represented by the lay leaders of each country’s NBIA organizations and a Scientific Advisory Board of leading NBIA researchers (with representatives from the TIRCON consortium) and clinicians that share our vision of collaboration and cooperation.
We are willing to network and exchange experiences with other organizations that share our goals in the field of rare diseases.
NBIA Alliance members left to right: M. Arends (Stichting Ijzersterk, Netherlands), A. Klucken (Hoffnungsbaum e.V., Germany), P. Wood (NBIA Disorders Association, USA), J.-L. Vasseur (AIDNAI, France), F. Sofia (AISNAF, Italy), A. Lopez (ENACH Asociación, Spain), R. Scalise (AISNAF, Italy), A. Nagel (Stichting Ijzersterk, Netherlands), M. Sheppard-Whalen (NBIA Canada), F. Mollet (NBIA Suisse, Switzerland), H. Jaskolka (Hoffnungsbaum e.V., Germany)
INTERNATIONAL NBIA PATIENT REGISTRY AND BIOBANK
First major international joint funding project.
•Held at the Friedrich-Baur-Institute of the University of Germany.
•NBIA Alliance participating in financially supporting the registry and biobank since 2015 when TIRCON ended, with over 200,000 euros dedicated to this cause.
•Valuable collection of disease-related information - will be used to advance NBIA research and enable faster access to worldwide clinical trials.
•Will help researchers as they study large cohorts of patients in performing basic and clinical research.
•Draw greater interest from potential funding sources to bring a drug to trial.
•Aims to combine scattered resources, integrate clinical and scientific knowledge, and generate a rich source for future research studies.
More Information on the NBIA Alliance can be found on the website: NBIAalliance.org
The NBIA Alliance is represented by the following countries:
Canada: NBIA Canada
Contact: Michelle Sheppard-Whalen
France: AIDNAI-Association International DNAI
Contact: Jean-Loup Vasseur
Germany: Hoffnungsbaum e.V.
Contact: Angelika Klucken
Hungary: NBIA Hungary (Magyarorszagi Mitochnondrialis Betegek Alapitvanya)
Contact: Ovidiu Botezan
Italy: AISNAF-Associazione Italiana Sindromi Neurodegenerative Da Accumulo Di Ferro
Contact: Natale & Fabrizia Scalise
Netherlands: Stichting Ijzersterk
Contact: Angelique Roodenburg
Poland: Association NBIA Poland
Contact: Maciej Cwyl
Spain: ENACH Asociation
Contact: Antonio Lopez
Switzerland: NBIA Suisse
Contact: Fatemeh Mollet
United States: NBIA Disorders Association
Contact: Patricia Wood