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Bob P.

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The Corneal Dystrophy Foundation
October 31, 2013

This is a wonderful volunteer organization which spreads facts and information about a rather rare disease whose treatment is constantly advancing. To keep up to date, and to face the onset of Fuchs' Dystrophy, those who are suddenly diagnosed have a place to receive individual attention while getting the most current information on treatments. So many physicians seem to be "behind the times" and the CDF is always at the cutting edge of accurate info.

Ways to make it better...

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

Find more people who need the info, and get more contributions to do same.

More feedback

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

MY ROLE:
Client Served

The Corneal Dystrophy Foundation
June 6, 2011

Without a doubt, this organization provides much need factual and medical journal-based education and information about Fuchs Dystrophy, a rather rare disorder causing dystrophy of the cornea.

This non-profit charity operates on a shoestring, with no paid staff, but a strong group of long-time volunteers who have no other motives but to help confused and anxious patients learn more after their initial diagnoses of Fuchs Dystrophy and then help them through each phase of diagnosis and treatment.

When I was first diagnosed in the early 2000s, I immediately sought accurate info and was rewarded with the compassionate and honest info they provide.

As I neared my corneal surgey, I kept track of technology and efficacy-based advances in the state of the art. I received the best care with the most appropriate surgery based on the information they provided me and other members through the Foundation's web-based outreach.

Anyone with corneal dystrophy should contact the Foundation for the help it will provide in a sea of misinformation, many times caused by rapid medical technology changes. Thousands of corneal dystrophy patients have avoided highly traumatic and difficult penetrating keratoplasty surgery (complete corneal transplants) and instead received the restoration of good vision within days, not months or years, through selective and limited transplantation surgery performed by over a hundred specialized ophthalmologists.

Only this volunteer organization is dedicated to providing up-to-date medical facts, based on peer-reviewed journal information, for world-wide patients to make their own informed decisions about corneal dystrophy.

The Great!

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

My decisions for eye surgeries were based on the dissemination of their knowledge and the other sources provided by them, including seminars with the leading surgeons in the corneal dystrophy field, based on peer-reviewed medical journal articles and studies. This progressive disease deprived me of the ability to see street signs at night, read the daily newspaper under excellent lighting, and generally caused a severe deterioration of the quality of my life.

Ways to make it better...

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

Enlarge its funding base so that the knowledge the group dispenses can reach more affected individuals around the world.

More feedback

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

How did you find this group?

Web searches on line.

What, if any, change in your life has this group encouraged?

It helped restore my vision with a newer medical procedure and provided essential information so my surgeries would be covered by my HMO. It is difficult to appreciate fully this organization's contribution unless you have had corneal dystrophy with your eyesight literally slipping away in a matter of months.

When was your last experience with this nonprofit?

2011

MY ROLE:
Client Served & I was a recipient of the Corneal Dystrophy Foundation's services and pursued surgeries to restore my eyesight over two years ago.