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1 reviews

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

Rating: 5 stars  

I have Fuchs' Endothelial Corneal Dystrophy and was looking for more information about corneal problems. The website and the people posting to the accompanying support group both have excellent information. What I like best is that the information is presented clearly, excellent explanations in terms that I understand. Research is emphasized and postings are updated in a timely manner.

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

in my understanding of my disease and in the medical options available to me. I am a better patient from the timely information posted and will be able to face my transplant with courage and a positive attitude rather than with fear and trembling.

If I had to make changes to this organization, I would...

I'm not sure I would make any changes. I suppose it is unreasonable to expect a busy physician to be available to chat or to answer questions in real time via the website. But perhaps a retired ophthalmologist could be employed to answer user's questions.

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

The timely information and access to research in corneal dystrophies.

The kinds of staff and volunteers that I met were...

I have interfaced only with the website.

If this organization had 10 million bucks, it could...

Provide funding for research into corneal diseases.

Ways to make it better...

Not sure; it was an excellent experience.

In my opinion, the biggest challenges facing this organization are...

I am not informed of the challenges of this organizaiton.

One thing I'd also say is that...

Since I suffer from a corneal dystrophy, I feel that I am a much more informed patient because of contact with the Corneal Dystrophy Foundation. I will face my transplant with confidence and courage rather than with fear and trembling. ccccccccccccccccccc

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?


Role:  General Member of the Public & I obtained information both from the website and from requested brochures.