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.
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.
On a Mission to Find a Cure for ASNSD
This film offers a personal look at the reality of living with ASNSD, an ultra-rare genetic disease for which there is currently no approved treatment.
Through Erik’s story, it shows the challenges and uncertainty faced by families living with ASNSD, but also the hope created by scientific progress, international collaboration, and a growing community determined to change the future of this disease.
The documentary also highlights the critical role parents can play in ultra-rare disease research by bringing together scientists, clinicians and families, building collaborations, raising funds, and helping turn an urgent need into a concrete path towards potential treatments.
By sharing this story, we hope to raise awareness of ASNSD, bring more families and researchers together, and show why continued investment in rare disease research can make such a profound difference.