Why therapy comes up so often
The PURA Syndrome Foundation's FAQ notes that physiotherapy, occupational therapy and speech and language support are the therapies most used by PURA families. The clinical summary in GeneReviews describes these therapies as part of usual care. It also recommends that speech and language therapists work with PT or OT when choosing communication aids. Your child's own team will decide what is right for them.
NHS first, then private if you choose
Most children are referred to NHS community therapy through their paediatrician, GP or health visitor. Some families add private sessions. If you do, check the therapist is registered on the HCPC register.
To find independent therapists, try the ASLTIP directory for speech and language therapists and the RCOT Find an OT directory. The APCP has resources on children's physiotherapy.
Questions you might ask a new therapist
Have you worked with children with low muscle tone, complex epilepsy or rare genetic conditions? How will you share goals with our NHS team and school? Would you be happy to read the PURA clinician handout? It is fine to say a provider is not the right fit.