Dear colleagues and friends

Today, we’ve joined our community in celebrating Rare Disease Day and sharing the progress that is being made to improve outcomes for people affected. Today seemed the perfect day therefore to launch our new report ‘The Need for a Rare Patient Passport’. Now the dust’s settled on a busy day let’s take a look at a simple way to make a difference for rare patients everywhere. 

For those living with a rare or complex condition, it can be challenging to convey healthcare needs to relevant professionals, especially when an emergency arises. To address this, some patient groups have devised “patient passports” and there are some excellent examples in use.  

However, not every disease comes with a passport. In 2022 Rare-X reported there were as many as 10,867 rare diseases affecting roughly 3.5 million people in the UK alone, and designing a passport for each would be an impossible task. So our charity, Cambridge Rare Disease Network (CamRARE), has designed and trialed a patient passport that, in two phases of testing, was reported to be very helpful to both patients and healthcare professionals.

We are delighted to share our Phase Two Pilot studyreportwhich delves into the experiences of individuals with rare conditions in the UK, focusing on the challenges they face in communicating their healthcare needs and evaluating the potential benefits of a Patient Passport in enhancing communication between these individuals, healthcare professionals, and others in non-clinical settings.

The study involved over 200 patients and caregivers who participated in focus groups, completed pre- and post-pilot surveys, and tested a passport for up to 12 months. Additionally, healthcare professionals such as doctors, geneticists, nurses, and other allied healthcare professionals were engaged in sharing their experiences and insights. For the highlights of this report visit the Rare Patient Passportwebpage.

The findings from the report have enabled CamRARE to develop an updated version of the trial passport. This version is user-friendly, customisable, can be regularly updated, is downloadable, printable flat for storage in a folder, and foldable for easy carrying on a lanyard (see images and passport template attached). Whilst we are keen advocates of digital solutions, this current communication format was preferred by 74% of patients and offers an effective solution to a common challenge faced by many rare disease patients today. The final version will be a fillable PDF format with guidance notes which can be used flat or folded. 

We hope that this report can serve as a valuable resource for shaping policies and action plans within the Rare Disease Framework to improve coordination of care and education of healthcare professionals in rare diseases and that you will join us in encouraging recognition, adoption, and acceptance of the Rare Patient Passport as a means to alleviate the unnecessary challenges of communicating rare conditions for those affected, whatever their age and wherever they are. A tool which they can carry with them through childhood into adulthood.

We’d like to thank, in particular, our Unique Feet community and all of the individuals, families and patient groups who gave their precious time to this project, to Costello Medical and Medidata Solutions for their pro bono support in the development and creation of this report, to Alexion AstraZeneca for grant funding to support the project delivery, and to medical students Lydia Seed and Joe Clymer and CamRARE team members Vaila Morrison and Lindsey Brown for their operational support. Further acknowledgments can be found in the report itself. 

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We hope you’ve had a successful Rare Disease Day 2024! 

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