Who Are We?

The Galactosialidosis Network was established as a source of support and advocacy for individuals grappling with the rare inherited metabolic disorder, Galactosialidosis. Born out of a deeply personal journey with our own daughter, Clara, who battled with this condition and died on 6 March 2024. During our fight to save her life our network gained global reach, fuelled by the collaboration of devoted parents, clinicians, and our partnership with ISMRD, a champion for rare diseases worldwide and Metabolic Support UK

Initially conceived to share Clara’s story, our mission swiftly expanded to embrace all children confronting Galactosialidosis. We strive to illuminate the true prevalence of this disorder on a global scale, raising awareness and offering support to families in need.

Yet, our vision extends far beyond mere support. We aspire to catalyse meaningful change by fostering collaboration between families, clinicians, and the scientific community. Our goal is twofold: to serve as a comprehensive resource for families seeking guidance and to actively contribute to the pursuit of approved, enduring therapies for Galactosialidosis.

To achieve this, we are curating publications and engaging with scientists worldwide, ensuring access to the latest, reliable information on Galactosialidosis. By empowering parents with knowledge and advocating for groundbreaking scientific advancements, we endeavour to pave the path toward effective treatments and, ultimately, brighter futures for those affected by this challenging condition.

Get in touch

If you would like more info or would like to collaborate with us to help find a treatment, please contact us using the details below:

You can also join the ISMRD mailing list.

International Directory of Clinicians and Scientists with experience of galactosialidosis are cited here, if you are a patient, parent or professional with an interest in galactosialidosis you may want to get in touch.