Joy Willard-Williford shares news of her husband Mark's recent death, and reveals his life story beyond his disease. 

While researchers gathered for intensive scientific discussions in Lausanne, a parallel programme offered something equally vital: practical tools and compassionate guidance for those affected by the NA syndromes. 

We were delighted to award the 2025 Glenn Irvine Prize to Dr Marianna Leonzino in recognition of her outstanding contributions to VPS13 research. 

One of the most striking moments of the Lausanne Symposium! 

At the close of the patient-oriented track in Lausanne, we asked attendees - patients, family members, and carers - to share their thoughts on what worked, what mattered most, and what they'd like to see in future meetings. 

We're delighted to share that two powerful stories from our community! 

Our heartfelt thanks to Sheila for her continued dedication and generosity. Her support makes a difference to us and to everyone in the NA community.

Two forum editions took place since we published our newsletter and here are the highlights of each of them! 

Nathan, who lives with XK disease, is proving that our community members aren't just navigating rare conditions, they're actively shaping the future of healthcare.

It’s been almost a year since Alex’s Cataclysmic Limericks first delighted us with its witty verses and whimsical watercolours.

Through our partnership with RARE-X and Global Genes, we're able to access valuable resources and knowledge-sharing opportunities that help our community navigate complex healthcare systems, and this recent webinar offered some particularly useful takeaways.

This autumn marks the end of Neil Price’s tenure as Trustee of NA Advocacy.