We offer the Glenn Irvine Prize in honour of our co-founder, to encourage early-career researchers to pursue developments in the neuroacanthocytosis research field.

This year we also took part in the Student Voice Prize organised by Beacon for Rare Diseases and Medics for Rare Diseases, where a charity is paired with a student who has an interest in rare diseases. The students are given three main topics to choose from to match the closest possible to the purpose of the charity they were matched with.

We’re proud to share the work of Amna Ali, the medical student who wrote the essay on Neuroacanthocytosis (NA) syndromes for the competition. Her piece, titled “Rare but Resilient”, explores the risks, hopes and challenges of clinical research into the ultra-rare diseases VPS13A and XK, and how crucial it is to involve young people early in the journey.

Amna spoke with Ginger Irvine, Chair and co-founder of NA Advocacy, and wrote up her insights into a thoughtful exploration of why rare disease research matters, not just for affected families, but for the future of science and medicine more broadly.

Her essay captures some powerful points:

• Raising awareness starts early. When students encounter rare diseases during training, they carry that awareness into their future roles as clinicians, researchers, and leaders.
• Early engagement shapes careers. Exposure to conditions like VPS13A and XK disease can inspire medical students to pursue rare disease work they may never have encountered otherwise.
• Student voices amplify our mission. By writing about NA in national / international competitions, students like Amna help raise our profile in new and unexpected places.

We published Amna’s full essay on our website: https://naadvocacy.org/rare-but-resilient-by-amna-ali, and we hope it inspires many more students to get curious, get involved, and help push the science forward! 

Supporting students is one more way we keep searching for clues to a cure, and we couldn’t do it without your help. If you’d like to support us, consider share this story with someone who might be inspired to learn more.