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NIH desires SCLS study patients

judithdavis3 Message
30 Mar 2009, 02:40 AM

Dr Kirk Druey and his very qualified team of experts are researching SCLS at National Institute of Health in Bethesda, MD (right outside of DC). I was the 3rd person to participate in this study this past week as an inpatient for 4 days. I have Dr Druey's permission to inform all of you about this and to give you contact information if you are interested in participating. One of Dr Druey's nurse practitioners Wei, is the contact person and she can be reached at The SCLS community is very blessed to currently have a study at NIH-thanks to Arturo's advocating for us. Please consider contacting Wei to participate. If you have any questions feel free to contact me directly at
claude53 Message
30 Mar 2009, 09:04 AM

I am highly interested by the study at National Institute of Health in Bethesda. Concerning the patients with SCLS on the other side of the Atlantic, do you think the research that you programmed could be practised in Europe by a specialised laboratory? Claude Pfefferlé (
judithdavis3 Message
30 Mar 2009, 05:14 PM

Claude-Contact Wei or Dr Druey at NIH. I am a nurse at Johns Hopkins and I had my coworkers draw my blood and I fedexed it overnight to NIH. I believe that you are in the medical profession as well and live in Switzerland if I remember correctly. Dr Druey wanted blood during a leak and then between leaks. At NIH it was much more involved with many consults and lots of blood work. Email me if you need any more details. Thanks.