Information, Education, Support and Advocacy for
Families, Children, Teens and Adults Who Are Living With The Challenges of
Congenital Anorectal, Colorectal or Urogenital Disorders


 

Support Resources

American Association of Kidney Patients

The American Association of Kidney Patients (AAKP) is a national non-profit organization founded by kidney patients for kidney patients. We strive to educate and improve the health and well-being of chronic kidney disease (CKD) patients.

Association for the Bladder Exstrophy Community

The ABC is an international support network of individuals with bladder exstrophy (includes classic exstrophy, cloacal exstrophy, and epispadias), local parent-exstrophy support groups, and health care providers working with patients and families.

Family Caregiver Alliance

Family Caregiver Alliance is a public voice for caregivers. Their pioneering programs - information, education, services, research and advocacy - support and sustain the important work of families nationwide caring for loved ones.

Israeli Parents for Children Born with Anorectal Malformations

Contact: Hili Praiss
e-mail: phili@itmut.info

National Family Caregivers Association

The National Family Caregivers Association educates, supports, empowers and speaks up for the more than 50 million Americans who care for loved ones with a chronic illness or disability or the frailties of old age.

PAGER

PAGER is a 501(c)(3) non-profit organization that provides information and support to parents, patients and doctors about Gastroesophageal Reflux (GER).

Sibling Support Project

The Sibling Support Project is a national effort dedicated to the life-long concerns of brothers and sisters of people who have special health, developmental, or mental health concerns.

SoMA e.V. - Selbsthilfeorganisation für Menschen mit Anorektalfehlbildungen

Anorectal Malformation Support Organization in Germany
Contact: Nicole Schwarzer
e-mail: info@soma-ev.de

The Fathers Network

Our mission is to celebrate and support fathers and families raising children with special health care needs and developmental disabilities.

The Oley Foundation

Founded in 1983 by Lyn Howard, MD and her patient, Clarence "Oley" Oldenberg, the Oley Foundation is a national, independent, non-profit 501(c)(3) organization that provides information and psycho-social support.

TOFS - Tracheo-Oesophageal Fistula Support

TOFS was founded by a TOF parent, Linda Morris, in 1982 - in response to the needs of children born with Tracheo-Oesophageal Fistula and associated conditions.

United Ostomy Associations of America (UOAA)

UOAA is an association of affiliated support groups, including Pull-thru Network. UOAA serves people with ostomies and other intestinal and urinary diversions through its member groups and by providing information, coordinating advocacy efforts and holding conferences.

VACTERL Association Support Group - UK

The VACTERL Association Support Group is a new support group dedicated to helping families affected by VACTERL Association here in the UK.

VACTERL Network

The VACTERL Network was established to provide support to families who have a child born with VACTERL/VATER or adults with VACTERL. The purpose of our organization is to share resources, tips and information among the families.