Navigating healthcare
When you, or someone in your family has a rare condition, it is likely you will likely have contact with a number of different healthcare professionals.
You may find this section useful for preparing for appointments or stays in hospital, and thinking about how to work effectively with your medical team.
Appointments (and waiting…)
Looking after yourself during appointments, tests, scans & procedures
Being an in-patient
Preparing yourself, supporting children, what if things go wrong?
You and your medical team
Knowledge is power, multidisciplinary teams, who do you see for what?
Managing transition
New ways of communicating & relating, managing concerns, settling in