ERN eUROGEN is delighted to announce the release of a new brochure summarising the Patient Journey for Anorectal Malformation (ARM). This vital resource builds upon the original, comprehensive ARM Patient Journey and offers a concise, visually engaging format designed to support patients, families, and healthcare professionals navigating this lifelong condition.
The brochure was developed by our European Patient Advocacy Group (ePAG) representatives Nicole Schwarzer (SoMA e.V.), Dalia Aminoff (AIMAR), and Kate Tyler (EAT). Their expertise, lived experiences, and commitment have created a resource that sheds light on the challenges and milestones associated with ARM. The dedication and collaboration of these representatives are invaluable, and we thank them wholeheartedly for their work in bringing this project to life. Special recognition also goes to Brigitte Steinbüchler, whose illustrations have transformed the brochure into a more accessible and impactful resource.
This new brochure serves as a guide through the ARM patient journey, from diagnosis and early care to adolescence and adulthood, offering best practices and practical advice for each stage of life. It also highlights the multidisciplinary approach required for optimal care and underscores the importance of community and patient support groups. Furthermore, further resources are signposted through hyperlinks and QR codes, enabling the brochure to be used in both electronic and print formats.
We encourage patients, families, and healthcare professionals to explore and share this brochure widely. It is through collaboration, awareness, and shared resources that we can continue to improve the quality of life for individuals living with rare and complex conditions.
To access the brochure and learn more about the ARM Patient Journey, please visit the Patient Information section on our ARM page.
