Guest guest Posted October 17, 2002 Report Share Posted October 17, 2002 Hello everyone. On my last post I was really disgusted with the fact that my particular disorder was not afflicting enough for the cystic fibrosis foundation to form any kind of study or have any info as to where I should go for help. My girlfriend (thank god for her) has once again come through with not only a place but an actual clinical study being held at NIH in Bethesda land. When I called I talked to a recruiter for this study who explained that they are only taking people with my EXACT diagnosis and genetic match. Imagine that. I was told by CF people that they did not know of any studies, treatment,clinics, or doctors who were specifically handling my case and lo and behold with a little research my girlfriend found NIH study for this. As a matter of fact, after I talked with the recruiter about transportation to the clinic (which was not provided) I was called 20 minutes later by a group doing another study on the same thing just down the hall in the same clinic, who offered me transportation on a government ticket to and from if I sign up for their study as well. I leave on November 4 and come back the 11th. I am very excited as the woman told me there could be a possible treatment. Won't know until I get there. Wishing everyone a pain free and relaxing night. dennis Quote Link to comment Share on other sites More sharing options...
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