ADDITIONAL LINKS

ABOUT KIDS GI Disorders
158 Pleasant Street
N. Andover, MA 01845-2797
Phone: (978) 685-4477 or
1-800- 394-2747
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).
Web site: www.aboutkidsgi.org

American Heart Association
7272 Greenville Avenue
Dallas, TX 75231
Phone: (800) AHA-USA-1 or
1-800-242-8721

The American Heart Association is a national voluntary health agency whose mission is to reduce disability and death from cardiovascular diseases and stroke.
Web site: www.americanheart.org

Angel Flight America (AFA)

AFA 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 AFA 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 AFA network will likely administer 80% of allcharitable 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. For more information contact Angel Flight America at www.angelflightamerica.org.

Birth Defect Research for Children Inc.
930 Woodcock Road, Suite 225
Orlando, FL 32803
(407) 895-0802

ABDC serves as a national clearinghouse to provide parents and professionals with information about birth defects and services for children with disabilities. ABDC 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.
Web site: www.birthdefects.org

March of Dimes Birth Defect Foundation
1275 Mamaroneck Ave.
White Plains, NY 10605
(888) 663-4637

March of Dimes offers a Catalog of Public Health Education Materials (booklets, information sheets and videos) available for purchase.
Web site: www.modimes.org

Medicaid

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.
Web site: www.cms.hhs.gov/medicaid/

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.
Website: www.netnet.net/mums/

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.
Website: www.fathersnetwork.org

NORD Inc.®-National Organization for Rare Disorders
P.O. Box 1968
Danbury, CT 06813-1968
(800) 999-6673 (voicemail only)
Fax: 203.798.2291

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.
Web site: www.rarediseases.org

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.
Website: www.oley.org

Pediatric/Adolescent Gastroesophageal Reflux Association (PAGER)
Main Office
P.O. Box 1153
Germantown, MD 20875-1153
(301) 601-9541

West Coast Office
2329 Fallbrook Place
Escondido, CA 92027
(760) 747-5001

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: gergroup@aol.com
Web site: www.reflux.org

The Pull-Thru Network
2312 Savoy St.
Hoover, Ala 35226
(205) 978-2930

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.
Website: www.pullthrough.org

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.
Website: www.rmhc.com/mission/rmhs/

The Sibling Support Project
Children's Hospital and Medical Center
P.O. Box 5371, CL-09
Seattle, WA 98105
(206) 527-5705

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.
Website: www.thearc.org/siblingsupport/

T.O.F.S.
St. George's Center
91 Victoria Road
Netherfield
Nottingham, NG4 2NN
England

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.
Website: www.tofs.org.uk

United Ostomy Association, Inc. (UOA) - Parents of Ostomy Children (POC)
19772 MacArthur Blvd., suite 200
Irvine, C.A. 92612-2405
(800) 826-0826

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.
Website: www.uoa.org

The VATER Connection
1722 Yucca Lane
Emporia, KS 66801
Contact: Angie Schreiber

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.
Website: www.vaterconnection.org

Other Links

uk.groups.yahoo.com/group/esofagusatresi    A swedish mailing list about EA/TEF. Membership is free.