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Helpful Links for Resources/Support for Hirschsprung Disease

3rd Annual "Holes for Hirschsprung" Event is Coming Up!

Save the date: August 22, 2008 is the day for the 3rd annual golf outing and fund-raiser to raise money for Hirschsprung disease research. The event will be held outside Cleveland, Ohio, and is a day-long extravaganza which includes golf on a great course, dinner, raffles, auctions, and prizes galore! Check out www.holesforhirschsprungs.com for more information, and get ready to have an awesome time for a great cause!

This event is organized by Heidi and Nino DiVincenzo, whose daughter, Lizzie, has Hirschsprung disease.

• Here are 3 helpful web sites:

International Foundation for Functional Gastrointestinal Disorders 
www.iffgd.org

Pull-Thru Network
http://www.pullthrough.org/

 Hirschsprungs & Motility Disorders Support Network (HMDSN) http://www.hirschsprungs.info/index.html
(Join the e-mailing list by e-mailing lisa@hirschsprungs.info)

• NIH publishes an information packet on Hirschsprung disease. It can be accessed at:

http://digestive.niddk.nih.gov/ddiseases/pubs/hirschsprungs_ez/index.htm

• You can also join yahoo e-mail groups that have daily discussions about Hirschsprung disease by going t

http://health.groups.yahoo.com/group/Hirschsprungs_Disease/

http://health.groups.yahoo.com/group/guardiansociety/

You will need to create a free yahoo user name and password. You can decide whether you want to receive all e-mails individually or have them condensed into one per day.  The parents in these groups are extremely knowledgeable and will be very helpful. You can even post your own questions.

• You can find a genetic counselor in your area at:

www.nsgc.org and click on “Find a Counselor”

• For those interested in more detailed scientific information:

GeneTests has excellent summaries on the genetics, diagnosis, management, and inheritance of many genetic conditions.

PubMed is the database used by medical researchers.

OMIM has clinical synopses of the medical literature on many genetic conditions.

Medline is an excellent online resource for medical information. Includes a dictionary, drug list, and encyclopedia.