RARE Patient Passport Trial

Cambridge Rare Disease Network Project

Have you heard about Cambridge Rare Disease Network’s Rare Patient Passport trial phase two?

Following the publication of their phase one report with the support of Costello Medical. Cam Uni Medical student. Lydia Seed, and our Unique Feet community, Cambridge Rare Disease Network are making great progress in rolling out their health passport pilot to more people so that they can gather diverse views to ensure their passport is what patients and their caregivers want and need and that healthcare professionals have contributed and provided feedback.

Over the coming year, their volunteer ‘Social Impact Lab’ partners at Medidata will be helping them to gather HCP’s views and review the best format for the final passport version.

Should they stick with a simple editable, foldable pdf?  Would people prefer a QR code or an app? Do you want a choice? Could they partner with others to embed the passport into existing platforms? It’s for you to decide.

The Basics:

any person living with a rare disease or who is undiagnosed, or their caregiver, can take part

the passport is suitable for children, young people and adults

you will be asked to complete a pre-pilot survey before receiving your passport

we can help you fill it in, print and fold it if needed

we’ll provide you with a zebra lanyard and wallet to keep it safe

you will try it in healthcare (and other) settings for 6 months

you will be asked to complete a post-pilot survey

your views will be incorporated into our final phase two report at the end of 2023

To register to take part: ‘This is Me’ Rare Patient Passport

To view the phase one passport report: Patient passport flipbook report

Alex - The Leukodystrophy Charity