Overview (Coming Soon)
We hope to have this up and running in June!
First study– We created a survey that will teach us how to differentiate what symptoms are associated with these Syndromes and which are not. We believe this will help parents know what to look out for and what questions to ask their doctors. The study will also include standard data that will be useful for researchers and scientists.
With this registry we hope to find ways to collaborate with researchers, pharma and biotech companies. Accentually create a system that fund itself and more research projects.
With the FGFR Syndromes- Collaborative Research Network we will prioritize 2 research projects at a time, fundraise, find the right scientists to do the work, and keep the research we want moving forward.
More information…Coming soon.…