The CGD Café

Hello,

Based on our own experience with CGD I know that there it is hard to find information about this disease. So I thought I'd summarize a couple of good web links here.

***** Information about CGD *****

Overview about CGD

http://www.cgd.org.uk/cgd/what_is_cgd

http://pediatrics.about.com/od/primaryimmunodeficiency/a/cgd.htm

***** Contacts for CGD Patients *****

NIH Laboratory of Clinical Infectious Diseases. Many CGD patients have consulted with people (Dr. Malech or Dr. Holland) here. http://www3.niaid.nih.gov/labs/aboutlabs/lcid/

The CGD Research Trust (Based in the U.K.) http://www.cgd.org.uk/

***** BMT Facilities for CGD Patients *****

One possible treatment for CGD is a bone marrow transplant. If you are thinking about this route it is very important that it is done at a site that has experience with CGD patients. The following is a list of hospitals where BMT for CGD patients have been preformed. Please feel free to add to this list.

London, UK - Great Ormond Street Hospital
http://www.ich.ucl.ac.uk/gosh/clinicalservices/Bone_marrow_transplant/Homepage

Cincinnati, OH USA – Cincinnati Children's Hospital http://www.cincinnatichildrens.org/svc/alpha/c/cancer/programs/bmt/

Durham, NC USA - Duke Pediatric BMT Program http://www.cancer.duke.edu/PBMT/

It is reported that more BMT treatments have been done in Europe and the U.K. but I don't have any specific hospital information.

An Overview of the Bone Marrow Transplant Process http://www.marrow.org/PATIENT/Donor_Select_Tx_Process/index.html