Other Disorders & Nonprofits

Other disorders can have symptoms that may be similar to or overlap with gastrointestinal functional or motility disorders.

Several of these are listed below along with links to sites where you can find out more information. Included on this page are other nonprofits that also address functional GI and motility disorders.


Patient Services Programs

    • A Kid Again every year, more than 27,000 children in the U.S. are diagnosed with a life-threatening condition. With the help of volunteers and donors, A Kid Again helps these children and their families reclaim innocence and recapture moments of pure joy. Bringing A Kid Again to more markets means more children facing life-threatening conditions and their families can enjoy Adventures as a family. 
      Website: https://akidagain.org/enrollnow/ 
    • Patient Services Incorporated offers financial assistance to alleviate the financial strain of a chronic illness. This includes copay assistance, premium assistance, and more.
      Website: Patient Programs-PSI
    • Rx Outreach Medications can be expensive and difficult to purchase. Rx Outreach is a nonprofit pharmacy whose mission is to provide affordable medications for those in need. 
      Website: Rx Outreach

Patient Information 

    • NIDDK’s Healthy Moments radio program provides free multimedia content that you can share on your own channels.  In each Healthy Moments episode, Dr. Griffin P. Rodgers provides one-minute tips on living a healthy lifestyle and preventing or managing diseases that have a significant public health impact. 
      Website: Healthy Moments

Mental Health

    • Open Path Psychotherapy Collective is a non-profit nationwide network of mental health professionals dedicated to providing in-office and online mental health care—at a steeply reduced rate—to individuals, couples, children, and families in need.
      Website: Open Path Psychotherapy Collective

Birth Defects
Birth defects (problems that happen as a fetus is developing during pregnancy) may cause the anus, rectum, and colon to not develop properly. Diagnoses include: Imperforate Anus; Cloaca; Cloacal Exstrophy; Anal Stenosis; Bladder Exstrophy; VACTERL/VATER Association; Hirschsprung’s Disease; Tethered Spinal Cord; Neurogenic Bladder; Caudal Regression; Down Syndrome; and others.

    • Pull-thru Network is a non-profit, self-help organization dedicated to providing mutual support to the families of those born with an anorectal malformation, colon disease, and the associated defects.
      Website: Pull-thru Network

Crohn’s Disease
Crohn’s disease is a serious inflammatory disease of the gastrointestinal (GI) tract. It predominates in the intestine (ileum) and the large intestine (colon), but may occur in any section of the GI tract. Crohn’s disease usually causes diarrhea, crampy abdominal pain, often fever, and at times rectal bleeding. Loss of appetite and subsequent weight loss also may occur. Symptoms may range from mild to severe, but in general people with Crohn’s disease can lead active and productive lives.

    • The Crohn’s and Colitis Foundation is a non-profit, volunteer-fueled organization dedicated to finding cures for Crohn’s disease and ulcerative colitis, and improving the quality of life of children and adults affected by these diseases.
      Website: Crohn’s and Colitis Foundation (CCF)
    • Color of Crohn’s & Colitis Illness’ mission is to improve the quality of life for BIPOC who are affected by IBD, Digestive Disorders and associated Chronic Illnesses; through Community, Research, Education, and Advocacy.
      Website: Color of Crohn’s & Colitis Illness

Cyclic Vomiting Syndrome (CVS)
CVS is an unexplained functional digestive disorder characterized by recurrent, prolonged attacks of severe nausea, vomiting and abdominal pain resulting in decreased quality of life for both children and adults. Largely overlooked until about the mid-1990s, millions of people worldwide suffer from this debilitating syndrome, while the clinical doctors are increasingly educated about CVS, the number of US patients diagnosed with this syndrome is climbing at a staggering rate.

    • Cyclic Vomiting Syndrome Association serves the needs of cyclic vomiting syndrome (CVS) sufferers, their families, and professional care givers by raising awareness and providing education and support to those affected by cyclic vomiting, abdominal migraine, and related disorders, while advocating for and funding research.
      Website:
      Cyclic Vomiting Syndrome Association

Eosinophilic Enteropathy
Eosinophilic Enteropathy is a digestive system disorder in which eosinophils, a type of white blood cell, are found in above normal amounts in the digestive system. Symptoms vary depending on where and in what number the eosinophils are found. Also, symptoms tend to be highly specific to each individual case. Common symptoms may include pain, swelling, skin rash or hives, reflux, choking, difficulty swallowing, nausea, vomiting, loss of appetite, stools containing blood and/or mucus, abdominal cramping, and/or diarrhea.

    • The American Partnership for Eosinophilic Disorders (APFED) is a 501c3 nonprofit organization founded in December 2001 by a group of mothers of young children living with eosinophil-associated diseases. They are a patient advocacy group dedicated to improving the lives of those living with eosinophilic disorders.
      Website:
      American Partnership for Eosinophilic Disorders

Eosinophila Myalgia Syndrome (EMS)
EMS is a rare, systemic, immune mediated disease that originally surfaced in the United States as an epidemic in 1989 resulting from ingestion of an amino acid, L-Tryptophan, a popular health food supplement at the time. The FDA recalled the supplement in March 1990. New cases may occur through unknown means. During the acute phase, EMS is characterized by flu-like symptoms, intense muscle pain with spasms and contractures, burning rashes, breathing difficulties and elevated eosinophil (a type of white blood cell) count. Later the disease attacks many areas of the body in a random manner and with varying degrees of severity from patient to patient.

    • The National Eosinophilia-Myalgia Syndrome Network, Inc., is a non-profit (501 C-3) organization dedicated to helping EMS survivors and their families by offering educational information and peer support. NEMSN is also committed to encouraging research to improve treatment for L-tryptophan induced EMS and to increasing awareness of the cause and effects of the disease and other similar auto-immune disorders.
      Website: National Eosinophilia-Myalgia Syndrome Network


Gluten intolerance/Celiac disease
Gluten intolerance/Celiac disease is the result of an autoimmune system response to the ingestion of gluten (from wheat, rye, and barley) that damages the small intestine. Classic symptoms include: diarrhea, bloating, weight loss, anemia, chronic fatigue, weakness, bone pain, and muscle cramps.

    • The Gluten Intolerance Group (GIG) provides education through local support groups and is a leader in food safety certification.
      Website: The Gluten Intolerance Group
    • The National Celiac Association is a 501(c)3 non-profit organization dedicated to educating and advocating for individuals with celiac disease and non-celiac gluten sensitivities, their families, and communities throughout the country.
      Website: National Celiac Association


Hepatitis
Hepatitis is an inflammation of the liver caused by a hepatitis virus. Symptoms vary and may include light stools, dark urine, fatigue, fever, nausea, vomiting, abdominal pain, and jaundice. Some persons have mild flu-like symptoms, and some people experience no symptoms.

    • The American Liver Foundation (ALF)’s mission is to promote education, advocacy, support services and research for the prevention, treatment and cure of liver disease.
      Website: American Liver Foundation

Interstitial cystitis (IC)
Interstitial cystitis (IC) is a chronic inflammatory condition of the bladder. Its cause is unknown. Symptoms vary and may include frequency, urgency, lower abdominal pain, muscle and joint pain, migraines, allergic reactions, and gastrointestinal problems.

    • The Interstitial Cystitis Association (ICA) is the only nonprofit charitable organization dedicated solely to improving the quality of healthcare and lives of people living with interstitial cystitis (IC).
      Website: Interstitial Cystitis Association

Motility Diseases and Disorders

    • The Gastroparesis Patient Association for Cures and Treatments (G-PACT) is a non-profit organization dedicated to increasing awareness of gastroparesis and chronic intestinal pseudo-obstruction
      Website: G-PACT
    • The Association of Gastrointestinal Motility Disorders (AGMD) serves as an educational resource concerning digestive motility diseases and disorders.
      Website: Association of Gastrointestinal Motility Disorders

Ostomy
An ostomy refers to the surgically created opening in the body for the discharge of body wastes. There are many different types of ostomies.

    • United Ostomy Associations of America, Inc. (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.
      Website: United Ostomy Associations of America

Pancreas

    • The National Pancreas Foundation provides hope for those suffering from pancreatitis and pancreatic cancer through funding cutting edge research, advocating for new and better therapies, and providing support and education for patients, caregivers, and health care professionals.
      Website: The National Pancreas Foundation

Parkinsons Disease
Parkinson’s disease (PD) is a neurodegenerative disorder that affects predominately dopamine-producing (“dopaminergic”) neurons in a specific area of the brain called substantia nigra.

    • The National Parkinson Foundation strived to find the cause of and the cure for Parkinson Disease through research, to improve the quality of life for persons with Parkinson and their caregivers, and to educate persons with Parkinson, their caregivers, healthcare professionals, and the general public about Parkinson disease and its treatment.
      Website: The National Parkinson Foundation

Parenteral and enteral nutrition
Sometimes a person cannot receive enough nutrients from the food they eat because of a severe gastrointestinal (GI) disorder that impairs their ability to swallow food, move food along the GI tract, or absorb nutrients from the food. In such cases, home parenteral or enteral (homePEN) nutrition support may be necessary.

    • the Oley Foundation is a national, independent, non-profit 501(c)(3) organization that strives to enrich the lives of those living with home intravenous nutrition (parenteral) and tube feeding (enteral) through education, advocacy, and networking. The Foundation also serves as a resource for consumer’s families, clinicians and industry representatives, and other interested parties. Programs are directed by the staff and guidance is provided by a board of dedicated professionals and patients.
      Website: The Oley Foundation

Pediatric Feeding Disorders
Pediatric feeding disorders make it difficult or impossible for a child to eat, drink, or digest food normally, often compromising their health and development. 

    • Feeding Matters is committed to partnering with families and healthcare professionals to promote awareness understanding of these conditions. 
      Website: Feeding Matters
      Resource: PFD ICD-10 Toolkit

Pediatric gastroesophageal reflux

Gastroesophageal reflux (GER) or reflux, is a medical terms used to describe a condition in which stomach contents – food and gastric acid – frequently flow back up out of the stomach into the esophagus. The food that comes up may or may not flow all the way out of the mouth. It may be forceful vomiting which rapidly and completely empties the stomach, or it can be more like a “wet burp” that doesn’t reach the mouth.

    • PAGER’s mission is to: gather and disseminate information on pediatric gastroesophageal reflux (GER) and related disorders; provide educational and emotional support to patients with GER, their families, and professionals; promote greater awareness of GER within both the medical community and the general public; and promote research into the causes, treatments and eventual cure for pediatric GER.
      Website: Pediatric Adolescent Gastroesophageal Reflux Association (PAGER)


Transplant Unwrapped

    • Transplant Unwrapped is a nonprofit organization with the mission to educate clinicians, patients, caregivers, and the general public about intestinal rehabilitation and intestinal and multivisceral transplantation.
      Website: Transplant Unwrapped


Temporomandibular joint and muscle disorders
Temporomandibular joint and muscle disorders (TMJDs) refer to a complex and poorly understood set of conditions that can cause pain in the area of the jaw joint and associated muscles and/or problems using the jaw. TMJDs can affect a person’s ability to speak, eat, chew, swallow, make facial expressions, and even breathe.

    • The TMJ Association (TMJA) is a global nonprofit advocacy organization dedicated to advancing research that has been identified by patients as critical to addressing their needs.
      Website: TMJ Association (TMJA)

Ulcerative colitis
Ulcerative colitis is an inflammatory disease of the colon, the large intestine, which is characterized by inflammation and ulceration of the innermost lining of the colon. Symptoms characteristically include diarrhea with or without rectal bleeding and often abdominal pain.


Urinary incontinence
Urinary incontinence (loss of bladder control) was conservatively reported in 1996 by the Agency for Healthcare Research and Quality (AHRQ) to affect 15%-30% of community-dwelling adults and at least half of all individuals confined to nursing homes. This translates into 13 million Americans, 11 million, or 85%, of whom are estimated to be women.

    • The National Association for Continence (NAFC) offers incontinence education and support for patients, caregivers, and professionals.
      Website: National Association for Continence (NAFC)
    • The Simon Foundation for Continence’s mission is to: “Bring the topic of incontinence out into the open, remove the stigma surrounding incontinence, and provide help and hope to people with incontinence, their families and the health professionals who provide their care.”
      Website: The Simon Foundation for Continence

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IFFGD is a nonprofit education and research organization. Our mission is to inform, assist, and support people affected by gastrointestinal disorders.

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