Below you will find links to key nonprofit organizations that provide information on incontinence treatments and management techniques. You will also find some resources and special programs from for-profit organizations that provide free information that has been reviewed by medical professionals. While this is a long list, it is by no means exhaustive. If you need more assistance locating resources, do not hesitate to contact us for help.
180 Medical Scholarship Program
180 Medical is honored to have a scholarship program to help those with spinal cord injuries, spina bifida, transverse myelitis, and/or a neurogenic bladder. Realizing the financial burdens that exist for many of these families, the company has developed the 180 Medical Scholarship Program to honor these young adults who pursue goals of higher education.
The American Urogynecologic Society
The American Urogynecologic Society (AUGS), founded in 1979, is the premier society dedicated to research and education in urogynecology, and the detection, prevention and treatment of female lower urinary tract disorders and pelvic floor disorders. AUGS members are practicing physicians, nurse practitioners, physical therapists, nurses and health care professionals, as well as researchers from many disciplines, all dedicated to improving the urogynecologic health of women.
Antidote is a digital health company on a mission. Their aim is to accelerate the breakthroughs of potentially life-saving treatments, by bridging the gap between medical research and the people who need it. In a world where 80% of clinical trials are delayed or closed due to lack of awareness, they use cutting-edge technology to match the right patients with the right trials. They’re helping medical researchers make progress, faster – and offering new treatment options to patients in need. If you are interested in participating in a clinical trial and progressing our understanding of incontinence and other health conditions you might face, use the box below and they will help locate a clinical trial that matches you. Click Start to begin and the follow the prompts.
Association for Pelvic Organ Proplaspe Support (APOPS)
APOPS is a USA based 501(c)(3) nonprofit advocacy agency with global arms, founded in September 2010 to generate awareness of pelvic organ prolapse (POP), to provide support and guidance to women navigating the physical, emotional, social, sexual, fitness, and employment impact of POP, and to bridge patients, healthcare, industry, research, and academia for the betterment of POP understanding and treatment evolution. Incontinence may be one symptom of pelvic organ prolapse.
Below Your Belt
Below Your Belt, L3C, is a social enterprise established to inform, educate, and inspire girls from 3 – 23 about pelvic health. BYB’s first project is to take its award-winning and evidence-based content and create a digital platform for girls ages 10 -14 and their grown-ups, including parents, teachers, and healthcare providers.
A free daily bladder diary is available for your to print out and use to log your daily intake of fluids and how often you find yourself going to the bathroom. This diary, kept for several days, will greatly assist your healthcare provider in diagnosing your type of incontinence, and helping you manage it. Download the diary.
Bowel Control Awareness Campaign
A new program to help patients and health care professionals feel more comfortable talking about bowel control problems is now available from the US National Institutes of Health. The Bowel Control Awareness Campaign and its Web resources raises awareness of bowel control problems, also known as fecal incontinence.
Caregiver Action Network
The Caregiver Action Network is the nation’s leading family caregiver organization working to improve the quality of life for the more than 90 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age. CAN serves a broad spectrum of family caregivers ranging from the parents of children with special needs, to the families and friends of wounded soldiers; from a young couple dealing with a diagnosis of MS, to adult children caring for parents with Alzheimer’s disease. CAN (formerly the National Family Caregivers Association) is a non-profit organization providing education, peer support, and resources to family caregivers across the country free of charge.
Change Together, an online resource managed by the Astellas Stakeholder Engagement team, was created to stimulate dialogue and create opportunities to share information, inspiration and ideas across the advocacy community. This forum aims to foster patient-focused collaboration, share best practices and provide resources aimed at improving patient care. The website features an area focused on urology.
A website devoted to providing a wide variety of product information for US consumers. The website also includes a decision tree to help consumers locate the most appropriate types of products for their kind of incontinence, along with information on reimbursement of incontinence products.
Continence Product Advisor
The continence product advisor is designed to offer independent, evidence-based advice to people with incontinence and to health care professionals worldwide.
ERIC, Education and Resources for Improving Childhood Continence
The ERIC Webshop provides products for childhood bedwetting, daytime wetting, constipation and soiling to children, young people, parents and professionals.
Families for Depression Awareness
The mission of Families for Depression Awareness is to help families recognize and cope with depressive disorders. Their purpose is 1) to help families recognize and manage the various forms of depression and associated mood disorders, 2) to reduce stigma associated with depressive disorders, and 3) to unite families and help them in coping with depression.
Financial Aid for Disabled Students – an online listing of academic scholarships for students of varying levels in the US and Canada.
Find a Urogynecologist Tool – created by the International Urogynecological Association, this is an international resource for locating a urogynecologist in your country.
A directory of reliable online health information sponsored by the governmental Office of Disease Prevention and Health Promotion
HealthUnlocked is a social network for health. By finding others with similar health backgrounds people can take on day to day health concerns together. And because their communities are set up by leading health organisations people have access to credible support. The Simon Foundation for Continence has a community on HealthUnlocked.
Health In Aging
Health In Aging was created by the Health in Aging Foundation, the official foundation of the American Geriatrics Society. It is a unique site for all older people and their caregivers providing expert information on health issues common in older people.
Prolonged diabetes in men and women may damage nerves, thus causing urologic problems that may include bladder problems and urinary tract infections. Follow the link for more information.
Healthy Mature Living Foundation
A website providing education and resources for consumers and healthcare professionals around a seldom discussed condition – accidental bowel leakage (ABL).
The National Women’s Health Resource Center in 2009 is celebrating 20 years of providing women in-depth, objective, physician-approved information on a broad range of women’s health issues. With more than 100 topics in its health library, including the latest medical advancements in each field, women often turn to them to answer their most pressing and personal health care questions. Through nationwide public education campaigns and personal assistance, NWHRC has helped women be informed health care consumers and has supported and promoted major milestones in the advancement of women’s health for the past two decades.
IBS Impact is a grassroots effort by people with Irritable Bowel Syndrome who are committed to greater public awareness and self-advocacy by people with IBS. Many people with irritable bowel syndrome experience varying degrees of fecal incontinence.
This website is a place for those with Irritable Bowel Syndrome to learn about new treatments, read product reviews and to share their stories. Also contains a blog on IBS.
International Continence Society (ICS)
The ICS is a registered charity with a global health focus which strives to improve the quality of life for people affected by urinary, bowel and pelvic floor disorders by advancing basic and clinical science through education, research, and advocacy.
The International Foundation for Gastrointestinal Disorders (IFFGD)
IFFGD is a nonprofit education and research organization whose mission is to inform, assist and support people affected by all types of gastrointestinal (GI) disorders. The Foundation also provides an online community or bulletin board for those with incontinence.
International Painful Bladder Foundation
The IPBF is a non-profit, voluntary, umbrella organization, active worldwide, that promotes knowledge and awareness of interstitial cystitis (also known as painful bladder syndrome, bladder pain syndrome and hypersensitive bladder syndrome) and associated disorders among patients, patient support groups, health professionals and the general public. The IPBF promotes the interests of IC patients around the globe.
Managing Life with Incontinence – Worldwide Resources Listing
This is a listing of country-by-country patient support and professional organizations that have an expressed interest in helping people with incontinence. They are listed alphabetically by country.
Mayo Clinic on Managing Incontinence (2013 edition) is a 224 page hard-cover book that provides you wiht a complete guide to successfully managing incontinence. It explains the causes of incontinence and what you can do to relieve your symptoms and enjoy a better quality of life. Order the book on the Mayo Clinic website.
National Association for Continence
The National Association For Continence is an organization dedicated to improving the quality of life of people with incontinence, voiding dysfunction, and related pelvic floor disorders. NAFC’s purpose is to be the leading source for public education and advocacy about the causes, prevention, diagnosis, treatments, and management alternatives for incontinence. NAFC provides an online community for those with incontinence.
The The National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC) is a service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). The NIDDK is part of the National Institutes of Health of the U.S. Department of Health and Human Services. Established in 1987, the Clearinghouse provides information about diseases of the kidneys and urologic system to people with kidney and urologic disorders and to their families, health care professionals, and the public. The NKUDIC answers inquiries, develops and distributes publications, and works closely with professional and patient organizations and Government agencies to coordinate resources about kidney and urologic diseases. Publications produced by the Clearinghouse are carefully reviewed by both NIDDK scientists and outside experts. Many are available in English and Spanish.
The North American Restroom Association
The American Restroom Association advocates for the availability of clean, safe, well designed public restrooms.
NORD: The National Organization for Rare Disorders
NORD is a unique federation of individuals and organizations working together to build a better world for people affected by rare diseases.
Social Security Disability Resource Center
Provides helpful resources for those seeking to understand how to apply and secure Social Security Disability Benefits.
Society of Urologic Nurses and Associates
The Society of Urologic Nurses and Associates is a professional organization committed to excellence in clinical practice and research through education of its members, patients, family and community.
Talking to Your Doctor About Bladder Concerns
This is an interactive patient education video program that provides information on overactive bladder (OAB) and also on how to discuss all your bladder symptoms with your doctor or healthcare provider. This program provides medical information along with lots of practical information and tools for the person with bladder symptoms. Real patients (not actors) provide more insight as well into the daily struggles of living with different bladder symptoms. The Simon Foundation for Continence collaborated with ProPatient to create this program.
A blog written by Trudy Triumph that shares personal experiences and challenges faced by those with a neurogenic bladder and/or bowel.
Underactive Bladder Foundation
The UAB foundation’s mission is to improve the quality of UAB patients lives by supporting research and disseminating information that educates and empowers patients, families and the medical community. The UAB Foundation is a not-for-profit education and research organization that advances awareness and monitoring of ever-expanding and evolving treatments available to improve outcomes for underactive bladder patients.
Urology Care Foundation
The Urology Care Foundation (formerly the American Urological Association (AUA) Foundation) is the world’s leading nonprofit urological health foundation—and the official foundation of the American Urological Association. They partner with physicians, researchers, healthcare professionals, patients, caregivers, families and the public to support and improve the prevention, detection and treatment of urological diseases. The site hosts a “Find a Urologist” directory and has extensive information on stress urinary incontinence and overactive bladder.
World Federation of Incontinent Patients
The World Federation of Incontinent Patients (WFIP) is a global federation of national patient organizations for sufferers of incontinence and related pelvic floor disorders. The Federation is dedicated to promoting worldwide the interests of such patients and patient associations. The Federation provides its individual member associations with the most comprehensive and up-to-date information and guidelines and educational resources. It seeks international cooperation and consensus via advocacy, public health education, and contact with official and scientific bodies and other patient advocacy groups.
Wound, Ostomy, and Continence Nurses Society
The WOCN Society is a professional nursing society that supports its members by promoting educational, clinical and research opportunities to advance the practice and guide the delivery of expert health care to individuals with wounds, ostomies and incontinence. Click on the Patient tab to access a directory of WOC Nurses near to you.
This organization provides a non-threatening environment where adolescents with bladder or bowel dysfunction receive education and psychosocial support that encourages independent living. Scholarships are available on their website. The rally is annual.