Top Charities Supporting Children With Digestive Diseases

Resources Available to Children and Families Living With Digestive Conditions

Children with digestive disorders—such as inflammatory bowel disease (IBD, including Crohn’s disease and ulcerative colitis), short bowel syndrome, gastroparesis and other motility disorders, Hirschprung's disease, and celiac disease—face special concerns as they navigate life with a chronic illness. Likewise, parents and caregivers require support and information that is not exactly the same as that which is needed for the adults who are diagnosed with these conditions.

There are several nonprofits and charities in the United States and the United Kingdom that are dedicated to supporting families that live with digestive diseases and conditions. These groups provide programs, assistance, and information specifically for children and their parents and caregivers.

Youth Rally

Youth Rally is a group dedicated to providing an enriching, week-long, residential summer camp experience for children who are living with bowel and bladder disorders. Some of the medical conditions that campers experience include having a Koch pouch, ileostomy, urostomy, colostomy, or a Barnett Continent Intestinal Reservoir (BCIR).

At the yearly Youth Rally, kids have the opportunity to meet and socialize with other children living with similar health challenges in a safe and supportive environment. In addition to recreational activities, education seminars that help children learn to cope and manage their disease are offered.

Campers are encouraged to fundraise in order to support their camp registration and Youth Rally, which also receives support from industry partners. Volunteers, including medical professionals and adult counselors, assist in providing on-site care and in ensuring that the camp runs smoothly. The LEAK is the email newsletter created by Youth Rally staff to keep campers engaged throughout the year.

Feeding Tube Awareness Foundation

The Feeding Tube Awareness Foundation is a nonprofit group that serves the community of parents and caregivers who are caring for children who receive nutrition through a tube. Some of the diseases and conditions that might require a feeding tube include IBD, gastroesophageal reflux disease (GERD), imperforate anus, Hirschsprung's disease, and congenital diseases of the digestive tract.

Parents and children who are navigating life while incorporating tube feeding face discrimination and misunderstanding, which is why the foundation focuses on the positive aspects of tube feeding. 

The organization also maintains a significant database of information about tube feeding, including tube types, surgery and procedures, tests, conditions that may require feeding tubes, and diet and nutrition. In addition, there are tips and tricks from experienced parents on how to integrate tube feeding into family and school life and troubleshoot problems.

Short Bowel Syndrome Foundation for Children of New England, Inc. (SBSNE)

The Short Bowel Syndrome Foundation for Children of New England, Inc. (SBSNE) is a nonprofit group based out of Rhode Island that offers support and information for children and parents who have short bowel syndrome (SBS) as a result of a disease or condition.

Parents of children living with SBS can request a care package of donated items to be sent to them, which includes items like onesies, blankets, toiletries, and stuffed animals. SBSNE also maintains a supply exchange program where donated supplies can be rerouted to another family living with SBS that can use them.

The Crohn’s in Childhood Research Association (CICRA)

The Crohn’s in Childhood Research Association (CICRA) is a charity based in the United Kingdom supporting children and young adults and their families who are living with Crohn’s disease and ulcerative colitis. Originally founded as the Crohn’s in Childhood Research Association in 1978, the group provides support for patients and their families, and offers research training fellowships to encourage physicians to enter into pediatric gastroenterology.

CICRA receives funding from private donations, fundraising events, and industry sponsors. Membership is free and CICRA can also provide informational leaflets for patients and for use in schools. Some of the resources available to patients include: 

  • A telephone line (0208 949 6209) and email (support@cicra.org) where caregivers can receive support and information
  • The CICRA Insider, a periodic newsletter containing information about research into Crohn’s disease and ulcerative colitis as well as happenings with the charity
  • A research blog focusing on the latest information that is written by pediatric gastroenterologist fellows that puts recent scientific studies into perspective
  • The Cool Zone, an area for kids that includes a forum and a penpal list

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