Patient registries are crucial for rare disease research because they collect and organize data from individuals affected by these conditions, helping researchers understand disease progression, identify patterns, and evaluate treatments. Since rare diseases often affect small populations, registries provide a centralized source of valuable clinical and demographic information, enabling more effective research, improving diagnosis and care, and supporting the development of new therapies.If you are a patient or a relative, you can support IRF2BPL research by registering in these registries. Thanks a lot.
- IRF2BPL Registry at Weill Cornell Medicine: https://shorturl.at/oxcNl
- IRF2BPL Registry at Simon’s Searchlight: https://research.simonssearchlight.org/account/create