A recommendation from one of our clients led us to work with the small charity Soft Bones UK on their patient information pack. This will be given to parents of newly-diagnosed children with Hypophosphatasia (HPP).
Soft Bones was founded by Meryl, mother of Maddox who was born with the rare genetic disorder HPP. The pack will be distributed through consultants at the only three hospitals in the UK that can diagnose this rare condition. The pack tells parents about Soft Bones so that they know they have somewhere to turn for support. The booklet includes information about HPP, patient stories and has a section at the back for them to record key information about their child’s diagnosis and care.
The booklet is in a folder with a magnet and stickers which they can use to remember that support is close at hand.