The CamRARE ‘This is Me’ Rare Patient Passport is a printable PDF. Supplied with guidance notes, it’s easy to complete and keep updated. It can be used as an A4 page, or folded to fit in a lanyard wallet.
Partnering with Patient Groups & Healthcare Providers
Passports have been travelling around the world to 58 countries! We’ve created 64 patient group partner passports to date. We’re also excited to be talking to 20 different healthcare settings and clinics about how they might adopt or signpost to the passport to support their rare community.
We’ve created a new PDF version of the Rare Patient Passport taking into consideration the expericnes, insights and recommendations from patients and HCPs involved in the two pilot studies.
Anyone with a rare or undiagnosed condition of any age, anywhere in the world, is welcome to use our Rare Patient Passport template to create their own personalised healthcare communication tool.
This new passport template launched in March 2024.
* Individuals, parents and caregivers – register to receive a template – no surveys to fill in!
* Patient Groups – register to show interest in adopting/adapting this passport for use with your own community. We’ll be in touch.
* Healthcare settings – register to show interest in trialing/adopting/adapting this passport for your setting.
Number of applications for a passport
THE NEED FOR A RARE PATIENT PASSPORT
‘This is Me’ Rare Disease Passport Pilot Study
Background: The Need
People with rare conditions often face complex healthcare challenges. Their conditions are hard to diagnose and treat due to limited medical understanding, and explaining them to new clinicians, especially in emergencies, can be overwhelming. The ‘This is Me’ Rare Patient Passport offers a clear, structured way to share essential information and ensure the best possible care.
CamRARE’s Unique Feet community in the East of England highlighted this need during the COVID-19 pandemic, worrying about hospital stays without familiar clinicians. Their experiences revealed an ongoing struggle: repeatedly sharing vital medical and care details with multiple professionals.
The “This is Me” Rare Patient Passport is an innovative tool designed to meet the unique needs of people with rare conditions. It provides clear, personalised information that goes beyond what standard health passports offer.
Phase Two Report
Following a small 2022 pilot with Unique Feet families, CamRARE ran a larger study in 2023. Over 300 people applied, and more than 250 completed surveys. Participants received an editable “This is Me” passport to personalise and use across clinical and non-clinical settings for up to a year.
The phase two report, published on Rare Disease Day (29 February 2024), explores the passport’s impact, healthcare professionals’ perceptions, and the opportunities and challenges of embedding it into clinical practice.
In October 2025, we published the findings from the phase two pilot in the European Journal of Human Genetics. You can read the full paper via the link below – and you’re welcome to reference or cite its findings in your own work.
What did respondents say were their key challenges in communicating their rare condition and healthcare needs?
What were respondents’ thoughts on their experience with the passport?
Phase Two Study: Unmet Needs, Impact, Next Steps
Unmet Needs
- Lack of rare disease awareness and knowledge amongst HCPs
- Challenges communicating complex information
- Lack of reasonable adjustments within healthcare systems
- Belief, legitimacy and understanding of care needs
- Lack of communication between care teams
- Patients’ confidence in their care
Impacts…
…are seen in emergency and routine care and in non-clinical settings.
Next Steps
- Provide a customisable Rare Disease Passport that is accessible, adaptable and free of charge
- Improve HCP’s advocacy and adoption of the rare disease passport
- Advocate for system changes to accommodate the needs of people with rare diseases
What you’ve said…
