PURA Syndrome Foundation Clinician Network
The Foundation's directory of clinicians with PURA experience (genetics, neurology, epilepsy, paediatrics), mostly in the USA with some in Europe, including Southampton.
Step 2 of 4
Prepare for first appointments
In the first months you may meet lots of new professionals. A little preparation helps you get the most from each appointment.
It's normal to feel overwhelmed. Bring someone with you if you can, and ask for a written summary afterwards.
The PURA Syndrome Foundation's clinician handout, Clinical Considerations for PURA, is written for any doctor meeting PURA for the first time. Many families share it with each new team.
Things you might do
- Print the first appointments checklist
- Bring the genetic report, a list of medicines and short videos of anything you're unsure about
- Ask who your main point of contact is
- Find out how therapy referrals work where you live
Print the checklist: First appointments after a PURA diagnosis
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