While these have so far been created for NA Advocacy based in London, the work is being extended and adapted to the sister organisation, NA Advocacy USA, to continue to align our ethos and common efforts.

Both organisations envision a future where individuals living with VPS13A or XK disease feel less alone, where earlier diagnosis is possible, and where global collaboration helps accelerate research. To get there, we’ve set out three clear goals for the years ahead: 

• Strengthening support for patients, families and carers through direct contact, resources and events
• Raising awareness among clinicians, researchers, and the wider public through strategic outreach and education
• Building capacity to grow our income, create, expand and invest in our programmes.

The plan outlines key programmes, like our ongoing VPS13 Forums, a new patient registry, international symposia, and our continued commitment to funding vital research. We’re also building a more structured fundraising approach, with a focus on regular giving, major donor engagement, and partnerships. And we’re investing in more accessible, inclusive communications to reach people affected by NA wherever they are in the world. 

On 2 July, the plans were presented to the Board of Trustees, who responded with their strong support and shared enthusiasm for the direction ahead. Their encouragement reflects what we hope this new strategy communicates to you, too: that we are small, but focused, and determined to do so much more for our community! 

We look forward to sharing progress with you as the work unfolds, and we thank you, as ever, for being part of our journey. Whether you’ve shared a story, offered a donation, or simply followed our updates, your support helps keep us moving forward!