Short Gut Syndrome Parents' Support Group
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Next Support Group Meeting

February 27, 2010
10:30 a.m.

Taylorsville Library
4870 S. 2700 W.
Salt Lake City, UT
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Resources

Links - Useful Information

http://intermountainhealthcare.org/hospitals/primarychildrens/Pages/home.aspx - Primary Children's Medical Center

http://grey.colorado.edu/shortgut/ - Short Gut Wiki written by short gut parents for short gut parents. Includes information about short gut syndrome as well as tips and tricks of caring for a child with short gut.

http://emedicine.medscape.com/article/193391-overview - eMedicine article about short gut syndrome.

http://en.wikipedia.org/wiki/Short_bowel_syndrome - Wikipedia article on Short Bowel Syndrome

http://transplantliving.org/ - Transplant Living, Information and resources for transplant patients

http://unos.org/ - United Network for Organ Sharing

http://www.thriverx.net/clinical_care/maxhealth_webinars.htm - ThriveRX Maximize Health! online nutrition education series for consumers with intestinal failure.

Local Services & Support Organizations

http://www.utahbabywatch.org - Baby Watch Early Intervention Services, services for children with developmental delays or disabilities age birth to three. Services include developmental therapy, physical therapy, feeding therapy, and parental support. Includes a list of early intervention service providers by region.

http://hopekids.org/index.aspx - Hope Kids, community support for children with life-threatening medical conditions and their families.

Primary Children's Medical Center Enterostomal Therapy

http://utahparentcenter.org/ - Utah Parent Center. A parent to parent program that provides information, peer support, training, and advocacy for parents of children with disabilities.

http://www.medicalhomeportal.org - Medical Home Portal.

Medical Home Portal Care Notebooks - Download or order your free care notebook to organize your child's medical information into a single location.

http://utahparentcenter.org/docs/DRB/CurrentDRB.pdf - Utah Parent Center Disability Resource Book, a list of disability resources in Utah updated monthly. Includes phone numbers, addresses, and websites for programs that include: early intervention services, recreational programs, education, therapy, advocacy, camps, and more throughout the state.

Message Boards

http://www.facebook.com/home.php?sk=group_179029535475631 - Short Gut Syndrome Families' Support Group on Facebook (Our facebook page).

http://health.groups.yahoo.com/group/Short-Bowel_Syndrome/Yahoo! Short Bowel Syndrome support group.

http://www.fireflyhealth.org/land/Short_Bowel_Syndrome/dhgd - Short Bowel Syndrome support group at Firefly Health (not a very active group).

http://health.groups.yahoo.com/group/tpnsupport/ - Yahoo! group for parents of children on TPN.

http://health.groups.yahoo.com/group/ostomystars/ - Yahoo! group for parents of children with ostomies.

http://health.groups.yahoo.com/group/Giftsfromheaven-Info/ Yahoo! group for parents of children who need or have received a small bowel, liver, and/or stomach transplant.

http://www.oley.org/forum.htm - Oley Foundation Community Forum

National Support Organizations

http://www.giftsfromheaven.info/ - Gifts from Heaven, Support group for parents of children with intestinal & liver disorders and diseases related to the small bowel, combined liver/small bowel & abdominal transplants.

http://www.oley.org/ - Oley Foundation, a support organization for home IV and tube feeds.

http://www.nutritioncare.org/ - American Society for Parenteral and Enteral Nutrition (ASPEN).

http://www.uoaa.org/ - United Ostomy Associations of America, Support and information for people with ostomies.

Medical Supplies, Suppliers, & Other Useful Products

http://www.hollister.com/ - Hollister Ostomy Supplies

http://www.convatec.com - Convatec Ostomy Supplies

http://www.thriverx.net - ThriveRX national infusion pharmacy for TPN and/or enteral supplies.

Other

http://www.donatelife.net/ - Donate Life America, National Organ Donor Awareness

http://www.yesutah.org/ - Yes Utah!, Utah Organ Donor Registry

http://www.cota.org - Children's Organ Transplant Association, fundraising assistance for children needing organ transplant.



This website is created by parents for parents. This site does not provide medical or any other health advice, diagnosis, and/or treatment. This site and its services, including the information above, are for informational purposes only and are not a substitute for professional medical or health advice, examination, diagnosis, and treatment. Always seek the advice of your physician or other health care provider before starting any new treatment, making any changes to existing treatment, or altering in any way yours or your child's current care or diet regimen. Do not delay seeking or disregard medical advice based on the information on this site. Some of the information on this site may be incorrect or out of date. No health information on this site is regulated or evaluated by the Food and Drug Administration and therefore the information should not be used to diagnose, treat, cure, or prevent any disease without the supervision of a medical professional.