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We also would like to offer support to the families and care-givers of ASNSD children through the research funded by the non-profit and the extensive network of professionals that is being built in the background.
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To learn more about us visit our LinkedIn profiles:
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The founders
We are the parents of Erik who has been diagnosed with ASNSD in 2025. We have decided to step up research to benefit for patients worldwide living with this severe metabolic condition with the ultimate objective of finding a cure.
Our Research Team
Erik's Care Team
Prof Christian Korff
Neuropediatrician HUG
Dr Rosalinda Giannini
Geneticist HUG
Dr Lahcene Regagba
Pediatrician
Dr Roxane van Heurck
Geneticist HUG
Clara Poiffaut
Physiotherapist
Delphine Salino-Bousseau
Ergotherapiste
Our volunteers & sponsors
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