You are not alone

and there is HOPE.

Science advances rapidly involving novel gene therapy approaches with clinical trials underway for various metabolic and neurological rare diseases. We're creating a strong global community that supports patient advocacy and helps advance research.

Join our patient registry

Join our FB group

Supporting materials

Being newly diagnosed and looking for information? You'll find here a summary on ASNSD cases, scientific publications and leading clinicians and organisations to contact.

Our blog

Follow the research advancements of our foundation and Erik's story. Scientific research, Erik's diary and the everyday healthcare journey of ASNSD patients.

Help with fundraising

Research, drug repurposing and therapy development are extremely expensive. You can support us by tapping into your local and global communities using some of our fundraising ideas and materials.