Explaining PURA: printable one-pagers
Four free sheets that explain PURA syndrome in plain English, for school staff, family, brothers and sisters, and new carers. Each one has an “About my child” section and prints on one A4 page.
The four sheets
School and nursery staff
For teachers, teaching assistants, nursery staff and school nurses.
Grandparents and family
We wanted to share a little about our child and PURA syndrome.
Brothers and sisters
Your brother or sister has PURA syndrome. Here’s what that means.
New carers and support workers
For respite workers, personal assistants, babysitters and new members of the care team.
How to use them: open a sheet, type in the boxes if you like, and print it, or print it blank and fill it in by hand. Nothing you type is saved or sent anywhere. The description of PURA syndrome comes from MedlinePlus Genetics and GeneReviews. It describes what’s common, but every person is different, so add what matters about yours.