The United Ostomy Associations of America (UOAA) is a 501(c)(3) nonprofit organization that supports, empowers, and advocates for people who have had or who will have ostomy or continent diversion surgery. Their mission is to promote quality of life for people with ostomies and continent diversions through information, support, advocacy, and collaboration.
Here are a few amazing facts about a very dedicated group of ostomates.
1. UOAA was founded in 2005.
After the previous national ostomy organization, United Ostomy Association (UOA), closed its doors in 2005, a group of volunteers founded the United Ostomy Associations of America in October of that same year.
2. They are an organization of affiliated support groups.
The United Ostomy Associations of America is an association of over 300 affiliated, nonprofit, ostomy support groups in the USA. You can locate an Affiliated Support Group (ASG) closest to and easily search for local US-based groups by entering your State or zip code. They also list virtual (non-local) groups which are regarded as ASG's and are national in scope.
3. They have an international connection.
UOAA is a member of the International Ostomy Association. The International Ostomy Association Coordination Committee (IOA) is an association of Regional Ostomy Associations that is committed to the improvement of the quality of life of ostomates (and those with related surgeries) worldwide.
4. For over a decade, they've published a quarterly magazine.
The Phoenix is the official publication of the United Ostomy Associations of America. Subscriptions are a major source of funding for the UOAA to help improve the quality of life of people who have or will have, an intestinal or urinary diversion. A one-year subscription is four issues, published in March, June, September, and December.
5. They have created an Ostomate Bill of Rights.
The original “Ostomate Bill of Rights” was presented to the UOA (predecessor organization) by the International Association of Enterostomal Therapists (now known as WOCN) in 1977. The goal was to inform ostomates that all elements of quality care should be available to them. In 2017, UOAA revised the document, now known as the “Ostomy and Continent Diversion Patient Bill of Rights” as a resource for patients to advocate for their own care.
Ostomate Bill of Rights
The ostomate shall:
- Be given pre-op counseling
- Have an appropriately positioned stoma site
- Have a well-constructed stoma
- Have skilled postoperative nursing care
- Have emotional support
- Have individual instruction
- Be informed on the availability of supplies
- Be provided with information on community resources
- Have post-hospital follow-up and life-long supervision
- Benefit from team efforts of health care professionals
- Be provided with information and counsel from the ostomy association and its members
6. The co-founders are longtime volunteers.
To recognize and give thanks for their incredible efforts, the Management Board of Directors named Kenneth and Linda Aukett co-founders of the UOAA in 2009. Sadly, Linda passed away on March 1, 2013, at the age of 69 from thyroid cancer. She worked tirelessly and selflessly for all of us and her legacy will live on for many years to come.
7. They have a public forum for the ostomy community.
With over 208,000 posts, 23,500+ topics and nearly 5,400 members, UOAA has one of the most active online discussion boards for the ostomy community. Their Facebook page is also a great way to connect with ostomates from around the world.
8. Their advocacy efforts helped pass ostomy supply laws in New York and Maryland.
In September 2014, New York Governor Cuomo signed into law a bill (S7893 in the Senate/A10140 in the Assembly) that requires all major commercial medical insurances policies to cover the provision of ostomy supplies. This bill was introduced by Senator Valesky and Assemblyman Magnarelli and took effect January 1, 2015.
On April 14, 2015, Maryland Governor Larry Hogan (R) signed SB 241 into law which mandates that health insurers must provide coverage for ostomy supplies. Maryland is the latest state to pass legislation mandating coverage of ostomy supplies joining Connecticut and New York.
9. They support events that help raise ostomy awareness.
The Run for Resilience Ostomy 5k was created by Lara Leininger and Angela Richardson, two ostomy nurses from North Carolina who wanted a family-friendly event to raise awareness for ostomies. All proceeds from these events help support UOAA's education and advocacy programs.
10. They established National Ostomy Awareness Day in 2010.
National Ostomy Awareness Day began in 2010 and is held annually on the first Saturday of October. UOAA continues to celebrate this day by spreading awareness and increasing national visibility of those living with ostomies. Their mission is to break the silence and shining a positive light on a surgery that has saved so many lives.
11. Their official video features ostomates living life to the fullest.
An inspirational video called "LIVING with an Ostomy" was created in 2014 to highlight the positive qualities of life after ostomy surgery.
12. UOAA's National Conference is held every two years.
Their National Conference is a four-day event that offers a variety of resources for the ostomates. This social gathering features educational sessions, ostomy nurse clinics, an exhibition hall, inspirational speakers, and social receptions. This year's conference will be held in Philadelphia, Pennsylvania on August 6-10. Learn more at www.ostomy.org.