ERN eUROGEN, the European Reference Network for Rare Uro-Recto-Genital Diseases and Complex Conditions, is pleased to announce that a comprehensive package of resources for Anorectal Malformations (ARM) is now available. This includes a Clinical Practice Guideline (CPG), patient support materials, and a dedicated sexual support website, all aimed at improving care and outcomes for individuals with ARM.
Access the Guidelines
You can download the full guidelines here:
The guideline has also been published in the European Journal of Pediatric Surgery in four parts:
- Part I: Diagnostics
- Part II: Treatment
- Part III: Lifelong Follow-up and Transition of Care
- Part IV: Organization of Care and Communication between Providers
We encourage healthcare professionals worldwide to implement these guidelines in their clinical practice to enhance patient outcomes.
Supporting Patients and Families
To further assist patients and their families, representatives for ARM from ERN eUROGEN’s European Patient Advocacy Group (ePAG) have developed two key resources, which you can download:
- Patient Journey for ARM – A comprehensive guide outlining key stages of diagnosis, treatment, and follow-up.
- ARM Brochure – A concise summary of the patient journey, designed for families.
Both resources aim to empower patients and caregivers with clear and accessible information.
Sexual Support Website
In collaboration with the European Reference Network for Rare Inherited and Congenital Anomalies (ERNICA), ERN eUROGEN has also contributed to the development of a dedicated Sexual Support Website for Anorectal Malformations & Hirschsprung’s Disease. Available in English and Dutch, this resource provides crucial support and guidance for individuals navigating these conditions.
Call to Action: Implement and Share
We strongly encourage healthcare professionals to use these guidelines in their clinical practice and share these valuable resources with their patients to ensure optimal care for individuals with ARM. By implementing these best practices and making information accessible to families, we can collectively improve outcomes and quality of life for patients worldwide.
For more information or any queries, please do not hesitate to reach out. Together, we can continue advancing care for individuals with complex rare diseases.
