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At age 4, Landon Whalen was diagnosed with FAHN, an extremely rare form of NBIA. Inspired by the need to help their son and recognizing the need to connect with other NBIA families, organizations and specialists world-wide; in 2014, Michelle and Lee Whalen formed NBIA Canada, to ensure all NBIA individuals are given the best care and hope possible.
In 2014, NBIA Canada was invited to the Third Joint Symposium on Neuroacanthocytosis and Neurodegeneration with Brain Iron Accumulation which was held in Stresa, Italy Oct. 30 - Nov. 1.
There were over 130 participants, including: researchers, clinicians, industry and patient organizations.
Everyone shared their work, experiences and knowledge in a collaborative environment to further NBIA research.
This marked the beginning of NBIA Canada's involvement in the international NBIA community. NBIA Canada made invaluable connections with the world`s leading experts on NBIA disorders and other NBIA advocacy groups worldwide.
Furthermore, an NBIA Alliance meeting was held where NBIA Canada was voted in as an NBIA Alliance member.