Leading Charities and Organizations for Ostomy Surgery

People living with intestinal diversion surgery have special needs that are supported by several non-profit and charity groups. The types of surgeries that are typically included are ileostomy, colostomy, ileal pouch-anal anastomosis (IPAA, better known as a j-pouch), and ileostomy, known as a Kock pouch.

Some of the resources that ostomates and those with an internal reservoir can find through these groups include in-person and online support, access to information on living well after surgery, fundraising opportunities, summer camps for children, and academic scholarships.

The United Ostomy Associations of America

support group talking
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The United Ostomy Associations of America (UOAA) was founded in 2005 after the United Ostomy Association (UOA) was discontinued. It is a nonprofit organization supporting people who have or will have ostomy surgery or continent diversion surgery.

Some of the procedures that fall into this group include:

  • Colostomy
  • Ileostomy
  • Urostomy
  • IPAA (j-pouch)
  • Continent ileostomy, such as Kock pouch

The UOAA is supported through private donations, memberships, and national sponsors from industry. Some of the resources provided by them include:

  • An “all-in-one” new ostomy patient guide
  • A message board in which members can discuss topics relevant to those with ostomies or internal reservoirs
  • A database of UOAA Affiliated Support Groups (ASG) that hold both in-person meetings and have virtual places for ostomates to find support
  • The Phoenix, a subscription-based magazine that provides information of interest to those living with a colostomy, ileostomy, urostomy, or continent diversion

Ostomy Canada Society

Ostomy Canada Society, formerly the United Ostomy Association of Canada, is a non-profit volunteer organization that supports people in Canada living with an ostomy (such as a colostomy, ileostomy, or urostomy).

The group is supported through fundraising initiatives, memberships, and sponsors. It has an award system available to post-secondary students with a permanent ostomy who are pursuing a degree and for registered nurses who are seeking to become an enterostomal therapy (ET) nurse.

It also holds several local events every month across Canada, including support groups and educational seminars. And they provide a printable communication card that can be used when a restroom is needed or when traveling by air—to ensure that airport security has an understanding of the needs of an ostomate.

Other services offered to the ostomy community in Canada include:

  • Local satellite chapters and peer support groups across Canada that hold meetings and events
  • A summer camp for kids who have an ostomy or a related condition, such as Crohn’s disease or ulcerative colitis
  • The Stoma Stroll Awareness Walk, which takes place on Canada Ostomy Day, to raise funds to support the organization
  • Ostomy Canada magazine, published twice yearly and sent to members

Quality Life Association

The Quality Life Association (QLA) is a non-profit group that is dedicated to serving the community of people who have undergone or are considering intestinal diversion surgery. This includes surgeries such as continent intestinal reservoir (Kock pouch and Barnett Continent Intestinal Reservoir), IPAA or j-pouch, and Brooke ileostomy.

The QLA’s mission is to educate and empower people living with intestinal diversion surgeries and assist them in living life without limitations. The organization is supported by funds from memberships, donations, and sponsorships.

In addition, the QLA offers information and videos on the various surgical procedures and how to live with them day-to-day. It also maintains a patient referral list of health care professionals to contact.

QLA's annual conference takes place in September and offers speakers and seminars that serve patients who have an internal reservoir or an ileostomy. It also gives attendees access to health care professionals who treat patients undergoing such procedures.

Australian Council of Stoma Associations Inc.

The Australian Council of Stoma Associations Inc. (ACSA) is a group that primarily serves and unites the regional ostomy groups throughout Australia, but also maintains a host of information that is helpful to Australians living with an ileostomy, colostomy, or urostomy.

The ACSA established The Australia Fund, which assists ostomates in countries who are underserved and face difficulties in obtaining proper care and supplies. It also provides information regarding a program from the Australian government, the Stoma Appliance Scheme (SAS), which helps ostomates apply for assistance in receiving products and devices they need in order to improve their quality of life.

The Colostomy Association

The Colostomy Association (formerly the British Colostomy Association), located in the U.K., began in 1967 and is funded through donations and fundraising events. Registration is free, but there is a small suggested donation.

One of the most important aspects of living with a stoma is having access to a public facility where an appliance can be emptied or changed, if needed. In the U.K., facilities for disabled people are often kept locked to avoid misuse. Therefore, the National Key Scheme (NKS), previously known as the Royal Association for Disability Rights (RADAR) Scheme was developed. The Colostomy Association can provide a key to these facilities and a photo card explaining that the key holder has a right to use them, for a small fee.

Other organization offerings include:

  • Tidings Magazine, published every quarter and free for subscribers
  • A host of literature and factsheets on a variety of topics helpful to those with a colostomy or ileostomy
  • The Junior Ostomy Support Helpline (JOSH), which younger ostomates and their parents can call for support and assistance
  • A directory of regional support groups for people living with an ostomy
  • A private Facebook group for ostomates​

European Ostomy Association

The European Ostomy Association (EOA) is a non-profit organization serving people with ostomies who live in Europe, the Middle East, and North Africa. Because this group covers such a broad area, they have made available a contact list of groups from the many countries included in their area.

There are currently 46 organizations that belong to the EOA. To raise public awareness and help improve the quality of life for people with stomas, the EOA holds a conference as well as World Ostomy Day; both take place every three years.

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Article Sources
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