ABOUT KIDS GI Disorders
158 Pleasant Street
N. Andover, MA 01845-2797
Phone: (978) 685-4477 or
Fax: (508) 685-4488
|ABOUT KIDS is the pediatric branch the International Foundation for Functional Gastrointestinal Disorders. ABOUT KIDS was formed to answer the needs of families, patients and health care professionals facing the many challenges posed by gastrointestinal motility disorders in infants and children. Since 1988, APHS, has been developing various programs to address its organizational objectives of research, education and family support. As a national and international not for profit charitable organization, APHS promotes public awareness of gastrointestinal motility disorders; these include, but are not limited to chronic intestinal pseudo-obstruction (CIP), Hirschsprung's disease (HD) and gastroesophageal reflux (GER).|
American Heart Association
7272 Greenville Avenue
Dallas, TX 75231
Phone: (800) AHA-USA-1 or
|The American Heart Association is a national voluntary health agency whose mission is to reduce disability and death from cardiovascular diseases and stroke.|
|Air Charity Network|
|Air Charity Network is a national network of charitable medical air transportation resources. The organization uses FAA-certified volunteer pilots who fly their own private aircraft. Also available are donated or deep discount airline tickets from airline partners through the National Patient Travel Center (www.PatientTravel.org). Eligibility for Air Charity Network assistance includes a verifiable medical travel need and patient situation where resources for commercial transportation are perhaps non-existant or very limited, at best. The Air Charity Network will likely administer 80% of all charitable medical travel trips in the United States this year. Actual transportation costs are donated by the volunteer pilots or special airline ticket funds. Donations to administer the program come from individuals, service clubs, foundations and corporations.|
Birth Defect Research for Children Inc.
930 Woodcock Road, Suite 225
Orlando, FL 32803
|BDRC serves as a national clearinghouse to provide parents and professionals with information about birth defects and services for children with disabilities. BDRC sponsors the National Birth Defect Registry and parent matching service. They offer newsletters, Birth Defect Fact Sheets, and treatment and support group information. They also provide a Birth Defect Registry.|
|Children's Hospital Boston, Esophageal Atresia Treatment Program|
|The Esophageal Atresia Treatment Program (EAT Program) at Children's Hospital Boston is the world's only center offering the most advanced and effective surgical treatment of esophageal atresia (EA) and the commonly associated condition tracheoesophageal fistula (TEF).|
March of Dimes Birth Defect Foundation
1275 Mamaroneck Ave.
White Plains, NY 10605
|March of Dimes offers a Catalog of Public Health Education Materials (booklets, information sheets and videos) available for purchase.|
|MARCI Kids (Midwest Acid Reflux Children's Institute)|
|MARCI-Kids is comprised of a team of experts with extensive experience treating children with Gastro Esophageal Reflux Disease (GERD). Pediatricians, pharmacology experts, and researchers from the University of Missouri-Columbia have come together to share the latest information available for treating this disease. The MARCI-Kids team includes health care providers who want to help children and families affected by this treatable disease.|
Medicaid is a program that pays for medical assistance for certain individuals and families with low incomes and resources. This program became law in 1965 and is jointly funded by the Federal and State governments (including the District of Columbia and the Territories) to assist States in providing medical long-term care assistance to people who meet certain eligibility criteria. Medicaid is the largest source of funding for medical and health-related services for people with limited income.
MUMS-Mothers United for Moral Support-National Parent to Parent Network
150 Custer Ct.
Green Bay, WI 54301-1243
Contact: Julie Gordon (877) 336-5333
MUMS (Mothers United for Moral Support) is a national Parent-to-Parent organization for parents or care providers of a child with any disability, disorder, chromosomal abnormality or health condition. MUMS's main purpose is to provide support to parents in the form of a networking system that matches parents with other parents whose children have the same or similar condition. They also refer families to appropriate support groups. A quarterly newsletter allows families to share and speak out about issues affecting their lives.
National Fathers Network
16120 NE 8th St.
Bellevue, WA 98008-3937
(425) 747-4004 ext.218
|The National Fathers Network (NFN) provides support and resources to fathers of children with developmental disabilities and chronic illness and the professionals who serve them. NFN develops materials in both English and Spanish.|
NORD Inc. - National Organization for Rare Disorders
P.O. Box 1968
Danbury, CT 06813-1968
(800) 999-6673 (voicemail only)
|One of NORD's main objectives is to encourage, promote and fund scientific research on the cause, control and ultimate cure of rare disorders (any disorder affecting fewer than 200,000 people). They act as a clearinghouse for information about rare disorders and facilitate networking of families with similar disorders for mutual support.|
The Oley Foundation
214 Hun Memorial, A-28
Albany Medical Center
Albany, NY 12208-3478
(518) 262-5079 or (800) 776-OLEY
|The Oley Foundation provides free information and emotional support to patients (consumers) requiring home nutrition support and their families. This includes enternal (tube) nutrition, for those who cannot eat but have at least a partially functioning intestinal tract; and parenteral (intravenous) nutrition for those who cannot absorb nutrients into their systems because of a damaged or removed intestinal tract. Support services include an information clearinghouse, bimonthly newsletter, local grassroots support networks, conferences and research on health outcomes.|
Pediatric/Adolescent Gastroesophageal Reflux Association (PAGER)
P.O. Box 1153
Germantown, MD 20875-1153
West Coast Office
PAGER is a parent-led, nonprofit organization providing information and support to parents of children with GE Reflux. PAGER offers telephone support, literature on GER, a monthly newsletter, a library of technical information, lecture series (video tape), list of parent-tested, practical care techniques, and monthly meetings for local families.
E-mail: [email protected]
The Pull-Thru Network
2312 Savoy St.
Hoover, AL 35226
The Pull-Thru Network is a nonprofit national support and information network for families of children born with anorectic malformations and their associated defects, or who have had a pull-thru surgery for any reason. They publish a quarterly newsletter with medical information, new research, bowel management issues, helpful tips and personal stories.
|Ronald McDonald Houses|
|The idea behind Ronald McDonald House is simple: provide a “home-away-from-home” for families of seriously ill children who are receiving treatment at nearby hospitals. Some children have to travel great distances to get the medical attention they need. In-hospital treatment may last one day, one year, or even longer. For the families of these children, accommodations can be hard to come by; options are often limited to costly hotels or unforgiving hospital chairs and benches. The Ronald McDonald House provides a comfortable, supportive alternative for these families. It serves as a temporary residence near the medical facility where family members can sleep, eat, relax and find support from other families in similar situations. In return, families are asked to make a donation ranging from $5 to $20 per day; if that isn’t possible, their stay is free.|
The Sibling Support Project is a national program dedicated to the interest's of brothers and sisters of people with special health and development needs. It includes newsletters, workshops and lots of resources for and about brothers and sisters.
St. George's Center
91 Victoria Road
Nottingham, NG4 2NN
|TOFS is a support group based in England for families who have children with Esophageal Atresia, TEF and VATER. They publish a newsletter every two months and a magazine, CHEW, once a year.|
United Ostomy Association, Inc. (UOA) - Parents of Ostomy Children (POC)
19772 MacArthur Blvd., suite 200
Irvine, CA 92612-2405
|The primary purpose of Parents of Ostomy Children is to support parents whose child has had or may have ostomy related bowel/bladder surgery. POC provides parent-to-parent support in person or by telephone from "parents who have been there." POC also coordinates educational sessions and social events at the national United Ostomy Association Conference. UOA publishes a quarterly magazine and POC publishes a national newsletter for parents.|
The VATER Connection offers support to families of children who were born with VATERs. They can lead you to other families who may have children with similar problems associated with VATERs.
|Working With Kids|
|WorkingWithKids was formed to offer a unique reference point on working with children as a career or in voluntary work. Working with children is both demanding and rewarding. We examine potential child-focused roles, the legal requirements and the qualifications you need to work with children. Our concern was that there was no single UK resource for interesting features and practical advice on this subject. Our features and articles are written by professional journalists and experts - who have a particular interest, or a background in this area.|
http://uk.groups.yahoo.com/group/esofagusatresi A swedish mailing list about EA/TEF. Membership is free.