Patient Journey for Anorectal Malformation published

ERN eUROGEN has released a new version of their Patient Journey for Anorectal Malformation (ARM). TOFS Trustee and EAT representative, Kate Tyler, is one of the authors of the paper along with Nicole Schwarzer (SoMA e.V. – Germany), Dalia Aminoff (AIMAR – Italy). The three authors are part of an European Patient Advocacy Group (ePAG) which is comprised of members who have lived experience of the conditions. 

This essential document provides an overview of important stages throughout the patient’s life, from the first signs and symptoms to diagnosis, surgery, and aftercare in the early years, from school age to adolescence, and to issues sometimes faced in adulthood.

Kate and the team originally presented an overview of the document at the eUROGEN Strategic Board Meeting in September 2023 but it took another 6 months of work to reach the final version.

Patient Journeys are service improvement tools that capture the natural history of a rare condition and the needs of patients through the day-to-day experiences and life-lens of people living with a condition. They are a structured method for patient representatives to engage with their communities to identify common needs and can be used to guide the actions to meet these needs.

You can read the full document here:
https://eurogen-ern.eu/ern-eurogen-patient-journey-for-anorectal-malformation