The urostomy community offers a wide network of advocacy groups, online forums, and local support chapters designed to help individuals navigate life with a urinary diversion. These resources provide education, emotional support, and practical tips for daily management.
Key Support Organizations
- United Ostomy Associations of America (UOAA): The primary nonprofit in the U.S. that advocates for the ostomy community. They offer a Support Group Finder for over 275 affiliated local and virtual groups.
- The Urostomy Association (UA): Based in the UK, this charity focuses specifically on urostomates and their caregivers, providing dedicated urostomy support and online meetings.
- Ostomy 211: A non-profit providing an emergency supply pantry and a private Facebook-based support group with over 4,000 members.
Online Communities & Forums
- Reddit & social media: Active discussions can be found on subreddits like r/ostomy and private Facebook groups such as “OstoMyFamily” or the “Urostomy Association Help and Support Group”.
- Vegan Ostomy: Features a specific urostomy forum for sharing experiences and asking technical questions.
- Meet an Ostomate: A global online community that allows users to create profiles, message peers, and participate in discussion forums.
Patient Support Programs
- me+™ (Convatec): A free program offering product support and advice from certified ostomy nurses and product specialists.
- Coloplast Care: Provides educational resources and tips for social life and emotional adjustment.
- UOAA Virtual Clinic: A partnership with The Wound Company that offers telehealth consultations with certified ostomy nurses for those without local access to specialized care.
Awareness & Advocacy
- World Ostomy Day: Recognized annually on the first Saturday of October to raise global awareness and improve the lives of ostomates.
- Open Restroom Movement: An advocacy effort by the UOAA to ensure ostomates have access to public restrooms, recognizing ostomies as a physical impairment under the ADA.