As we reach the halfway point of Year One, we wanted to share progress on the key initiatives that are shaping NA Advocacy's future, and be honest about where we've faced challenges.

Major Programs & Milestones

The 12th International Symposium in Lausanne was a great success, as you read in previous issue of the newsletter as well as on all our other media.

Our monthly donor programme, Partners in Progress will be launched soon – see the dedicated article in this issue.

The international patient registry project is currently spearheaded by Dr Dave Asinger, member of the Board of NA Advocacy USA and more updates will follow in due course.

Our new website is in the making and we’re working hard to share all the valuable information we accumulated over almost three decades in the most accessible ways to all our audiences.

Educational webinars and events are something we’re looking into developing soon.

On the research front, we have a new Research Advisory Committee who support and guide our research direction with an impressive breadth of experience – read more about it in the dedicated article in this issue.

Financially, we continue to manage costs carefully, prioritising programme delivery while maintaining the governance and systems that keep us compliant and effective.

We are always looking to expand our community and we welcome any volunteer support you may be able to share with us.

Your engagement through NA News, social media, and the VPS13 Forums continues to be vital to us, so please follow and share to your networks, it helps us raise the awareness of our conditions. Collectively, we can improve the lives of people affected by the ultra-rare NA syndromes.

We also continue our collaboration with rare diseases umbrella organisations, networking and making sure our voices are heard where it matters.

Looking Ahead

Not everything has gone exactly to plan, some steps had to be taken slower than originally anticipated. But we remain committed to the vision that drives this strategy: a world where NA syndromes are correctly diagnosed, well understood, effectively treated, and ultimately cured.

As we move into the second half of Year One we’ll continue to work hard and we're grateful for your continued support and partnership in this journey!