Aquagenic Pruritus is a rare skin disorder characterized by intense itching after contact with water.
There are over 700 of us on the yahoogroup, so you'll find more company there. Join us! Also, click on my profile for a bit more info.
Hi, Marnie: thanks for your response; it certainly saves the $50 bucks that the guy is asking for. I did check the wikipedia article on this issue and thru all of the hits, I ended up here. Now that I know I have "company" and I'm not imagining this, I am interesting in "chatting" with the others to learn/share some of the things that they have used and what has worked for them.
I've heard from someone who paid for the e-book that it didn't offer anything new that isn't already in our yahoogroup email archives.
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CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
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Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
Visit sanfordresearch.org/CoRDS to enroll.
Interstitial cystitis, Vulvar pain/vulvodynia, Raynaud's…
I suspect aquagenic pruritus as well...
Moderator of the yahoogroup called "aquagenicskin", which is now defunkt. The archives moved over to Groups.io, but it is now dormant as well. The Facebook group is much more active....
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