While We Upgrade to a New Platform
The NF Registry has always been powered by you, patients, families, and researchers working together to accelerate answers. We're taking the next step forward with a major platform upgrade that will make participating easier and even more impactful.
This transition is part of our move to a new and improved platform hosted by the National Organization for Rare Disorders (NORD), a trusted leader in rare disease data management and advocacy.
From November 1, 2025, through January 2026, the NF Registry will be temporarily unavailable while the upgrade is completed. All existing NF Registry participant data will be securely transferred and available to you when the new platform launches in early 2026.
We look forward to welcoming you back to a faster and more user-friendly experience.
In the meantime, please stay connected and sign up for updates by emailing us at nfregistry@ctf.org.