A lifesaving tool for mitochondrial disease patients
Imagine having to quickly explain what mitochondrial disease is to a new healthcare professional or in a medical emergency. It’s not easy, is it? That’s why the Cambridge Rare Disease Network (CamRARE) have created an innovative solution in the shape of the ‘This is Me’ Rare Patient Passport designed to address the unique needs of individuals with rare conditions like mitochondrial disease.
How the ‘This is Me’ Rare Patient Passport helps
We’re thrilled to join forces with CamRARE to offer these passports to individuals living with mitochondrial disease. This passport is a powerful tool that allows patients and carers to share vital details about their medical history and care needs when they’re out and about, meeting a new healthcare professional or in an emergency.
This free document offers a quick and easy way to communicate essential health information. Developed with input from clinicians and families with lived experience of rare diseases, it can be updated as needed. Designed to be printed either single- or double-sided, it can easily be stored in a folder or carried in a wallet or on a lanyard for convenient access during medical emergencies.
Patient empowerment through the Rare Patient Passport
Katie, the Patient Engagement & Advocacy Manager at The Lily Foundation, emphasises how this initiative puts control back into the hands of mito patients. “This passport, designed to be completed by patients or their parents, provides a clear, accessible and concise format for conveying essential healthcare information,” she explains. “It’s a fantastic advocacy tool and shows Lily’s commitment to empowering mitochondrial disease patients when facing potentially stressful situations.”
How to get your Rare Patient Passport
If you or a loved one are affected by mitochondrial disease and would like to register for a Rare Patient Passport, simply fill out our online form. After registration, you’ll receive an editable template along with guidelines to create your personalised passport. Be sure to select The Lily Foundation when asked if you’d like a branded passport from a specific patient group.
