Rare Patient Passport

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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.

The passport is free to download.

For instructions how to download and create your passport, click here: User guide

To download the passport template, click here: Rare Patient Passport

Watch this video to see how to fold the passport to fit into a lanyard pouch: Folding your passport

Any lanyard can be used.  However, if you would like a zebra-themed one, they are readily available online.  Please ensure that any lanyard used has a plastic, breakaway clip for safety.

If you have any questions, would like FOP Friends to print the passport for you, or need a pouch, please get in touch: Contact Us

The team at Cambridge Rare Disease Network also have a range of other resources on their website, to support people living with a range of rare conditions.

Visit their website: Resources