Navigating the clinical care system for children and adults with Rett Syndrome in the UK can be overwhelming and confusing especially for newly diagnosed families.
To help families and carers better understand the clinical provision which is available, at Reverse Rett, we have started the process of mapping the clinical provision for both adults and children with Rett Syndrome to try to clarify what clinical support is out there for patients, what each clinic or specialist does differently and how they are funded.
We welcome thoughts and suggestions re other information to include. Please contact firstname.lastname@example.org with feedback. Thank you!