Rare Patient Passport

We are delighted to have partnered with the Cambridge Rare Disease Network to create Rare Patient Passports for our families living with FOP and POH.

When living with a rare condition, patients and families often find themselves with numerous hospital and medical appointments. The information asked is very often the same, and it can be mentally and emotionally exhausting to repeat oneselves.
The team at Cambridge Rare Disease Network have worked with families and clinicians to produce an editable, personalised health and care passport.
This allows you to communicate your key medical and care information in an emergency, when away from home or when meeting new people.
