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lois-rochelle

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1 reviews

Review for The Corneal Dystrophy Foundation, San Jose, CA, USA

Rating: 5 stars  

I have a rare eye disorder (Fuchs' corneal endothelial dystrophy) and found the Corneal Dystrophy Foundation and their online discussion group (Fuchs' Friends) when googling for general information. They offer a very wide and useful wealth of information about what experiencing the disease has been like for others, what surgeries are done to treat the disease, and what sorts of experience real people have had with these surgeries. The online discussion group is set up so that group members can also give each other the names of surgeons in different parts of the U.S. who specialize in this type of surgery. The online discussion group has a "moderator," which means, as far as I can tell, that someone knowledgeable reads all the posts daily, and generally helps to keep discussions sensible and well-informed. In addition, I did a search of old online discussion group posts for mention of my other eye disease--glaucoma--and found information indicating that there was an important question I was going to need to ask my own doctor. In addition to the things I have mentioned, this group also does periodic conferences, where recent advances related to treatment of the disease are discussed at laymen's level. However, I haven't attended any conferences yet.

I've personally experienced the results of this organization in...

(I covered this in "review," above.)

What I've enjoyed the most about my experience with this nonprofit is...

I can both find information and interact online with others whenever I want to (and the information is sound).

How frequently have you been involved with the organization?

About every six months

When was your last experience with this nonprofit?

2010

Role:  Client Served & Sought information about my medical condition from their web site and online Yahoo discussion group.
bob13 (Nonprofit Staff) wrote:

To clarify, ALL postings are read by at least one and sometimes several moderators but all postings can be read by all group members. Responses to queries may come from any experienced person in the group. It operated as a sort of Delphi group and all content since our start more than a decade ago is available to members with Yahoo IDs.