These groups prove that urostomy awareness does make a difference.

November is National Bladder Health Month and we’d like to help connect ostomates in our community to important information about bladder conditions and resources for education and support.

There’s definitely value in knowing the right organizations, and finding support is something every person with an urostomy should consider. Here are six excellent non-profit organizations that urostomates can turn to for help.

1. United Ostomy Associations of America

The United Ostomy Associations of America, Inc. (UOAA) is a non-profit organization that supports, empowers, and advocates for people who have, or who will have an ostomy or continent diversion surgery. Whether you’re looking to join one of their 300+ Affiliated Support Groups (ASG) across the United States, or seeking answers online through their community forum, UOAA has helpful resources and guides available for people with urinary diversions. Membership to UOAA is open to anyone in the United States through an ASG, or individually. The Phoenix magazine is published quarterly and is available in print or digital versions.

2. Urostomy Association

The Urostomy Association (UA) is a registered national Charity in the United Kingdom that was founded by a group of people at the Christie Hospital in 1971 to assist people who are about to undergo or who has already had surgery resulting in a urostomy, continent urinary pouch or a neo-bladder. To provide additional support and face-to-face contact for its 2,500 members, the UA has several local branches which hold meetings two or three times a year. Those who are not residents of the UK can join their Postal Branch membership which is available worldwide. The UA Journal is published three times a year and is available to members of the Association.

3. Bladder Cancer Advocacy Network

The Bladder Cancer Advocacy Network (BCAN) was founded in 2005 and is the only national advocacy organization devoted to advancing bladder cancer research and supporting those impacted by the disease. Their video series, “The New Normal: Living with a Urinary Diversion” profiles eight bladder cancer survivor stories to let others know about living well with a urinary diversion. BCAN has eight State chapter groups and numerous in-person groups throughout the United States and Canada. Registration for the 2018 Walk to End Bladder Cancer began in October, click here to find an event near you.

4. Fight Bladder Cancer

Fight Bladder Cancer is the only UK-based bladder cancer charity founded and run by bladder cancer survivors and their families. They provide support to those living in the United Kingdom affected by bladder cancer which, of course, includes those who have urostomies. Their support services include an online confidential forum which has about 3,500 members, and a nationwide 1-to-1 peer support service called Bladder Buddies. FIGHT Clubs are local support groups which we are opening up across the country as networked clubs. They also publish FIGHT magazine, which often includes inspirational patient stories of those with urostomies and neobladders.

5. Association for the Bladder Exstrophy Community

The Association for the Bladder Exstrophy Community (A-BE-C) is an international support network of individuals with bladder exstrophy, including classic exstrophy, cloacal exstrophy, and epispadias. They assist patients and families living with bladder exstrophy by making education, support, webinars, and resources available to those living with bladder exstrophy. Courage To Shine ™ is the patient awards program of the Association for the Bladder Exstrophy Community and was founded to acknowledge individuals who have overcome congenital genitourinary birth defects or major urological surgeries and transformed that adversity into triumph.

6. Mitrofanoff Support

Mitrofanoff Support was founded in early 2010 by Kyla Rogers and in February, 2012 they officially became a Registered Charity in England and Wales. For those not familiar, mitrofanoff is a surgical procedure in which the appendix is used to create a conduit between the skin surface and the urinary bladder. This charity provides emotional support, reassurance, information and networking online and at two Patient Education Days events every year. They cannot accept members outside of England and Wales due to Charity Commission laws, however everyone is welcome to join their Facebook group.

No matter where you live in the world, these organizations are a fantastic way to connect with fellow ostomates. As a young urostomate and ileostomate, my hope is that you’ll become more involved in urostomy awareness so we can all come together to share our experiences and empower each other.

Patricia Candow and I attending the Urostomy Association event in September.

Patricia Candow and I attending the Urostomy Association event in September.

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