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Ideas needed for CGD Trust Hello everyone! First of all, I would like to let everyone know that Sean, who was SO sick in December, has bounced back to his normal self. Quite a scare! My grandma who is 97 1/2½ years old, has a CGD Trust set up in her will and the lawyer said she needs more concrete ideas to establish it. We are interested in educating people (including the medical field) about CGD and also in funding research. So if any of you have any specific ideas to help us out, that would be great! (This does not need to be limited to the U.S. It can be international...anywhere that would help with CGD.) Anyway, I look forward to hearing from you and I will thank you ahead of time for your help and input!!
Sue Van Ness
Submitted by Sue V on Tue, 2007-04-03 05:02. categories [ General Discussion ]
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 Hi Sue, Please check out the site on http://www.cgd.org.uk/ It's from the CGD research trust in the UK. You can find a lot of info there. The CGD Research Trust is funding vital state of the art research at a time when Britain is a world leader in the treatment of genetic disorders. The charity also provides support to families, and information to anyone with an interest in CGD. I'm sure they can help you! All the best, Grégor Live your life, it's worth it! |
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It seems that once a patient knows they have CGD then the outlook is significantly improved. Just think how many people don't know until they have some life threatening infection.
If there was some way to key Dr's into considering CGD as a posibility when they are considering unusual infections or symptoms, then earlier diagnosis would occur and many lives would be improved. I don't know how this would be done, but it seems like education would help.