After several months on the waiting list, Citizen Health has officially approved our community to join their upgraded platform. This marks the beginning of a careful, phased process toward creating a registry that can support families, clinicians, and researchers for years to come.

For those who have been with our community in the early years, you may remember that we pioneered a registry with the kind support of our colleagues working in Huntington’s Disease and their registry within the European Huntington Disease Network (EHDN). These efforts gave us valuable experience, but it wasn’t sustainable in the long term, both the running costs and the need for dedicated staffing made it difficult to maintain for such small organisations like ours. 

In addition, there is the need for incentives and monitoring, and periodical updating of data entries. Although that database is now dormant, it laid important groundwork and helped shape our understanding of what a future registry should look like and hopefully we may be able to find a way to utilise the historical data held in there and merge with this project.

Citizen Health (https://www.citizen.health) is a US‑based organisation that partners with rare disease groups to help them collect and manage health information in a way that is secure, patient‑controlled, and designed to support future research. Their new platform is currently being rolled out to existing partners, and once that transition is complete, we will be invited to begin our own onboarding. The anticipated timeline is sometime in the autumn 2026, and we’ll keep you posted as the upgrades progress.

For our community, this is a promising development. A registry is a critical tool for rare disease advocates: it helps us understand how many people are affected, how symptoms evolve, and what patterns might guide future research or even clinical trials when we will get at that stage. It also gives patients and their families a structured way to contribute to scientific progress, at their own pace and with full control over their information. The new platform features a personal AI companion which can organise and simplify complex data, record and transcribe doctor visits, answer questions about lab results or medication side effects, and draft insurance appeals, all of this right from your phone.

Although Citizen Health is based in the United States, our intention is to build a registry that serves the global NA community. Patients and their families outside the US are very much part of this vision and are welcome to participate. As we move through the initial setup, we will explore how best to include everyone in a way that respects local regulations. We are committed to ensuring that everyone can take part safely and meaningfully. So if you are based outside of the US, please express your interest by emailing despinadinca@naadvocacy.org.

We hope you understand that we are keen to share the news at this early stage, but further steps will be planned and information will be shared as it becomes available and relevant.

The platform is not yet open for sign‑ups, and data will not be collected until after the onboarding process is complete. We will provide clear guidance when the time comes, including how participation works, what information is needed, and how privacy is protected.

For now, this is simply the first step, a very encouraging one, toward a resource that will grow over time and benefit the NA community in the years ahead.

We look forward to sharing more updates as the process unfolds. This is the beginning of something important!