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78 Reviews
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October 22, 2013
1 person found this review helpful

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October 22, 2013
1 person found this review helpful

They have so much knowledge and have helped so many in ways.

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Will you volunteer or donate to this organization?

Likely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2013

October 21, 2013
1 person found this review helpful

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October 21, 2013
1 person found this review helpful

All the information and support I could ever imagine needing was provided by the wonderful organization.

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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?

2012

March 26, 2013
1 person found this review helpful

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March 26, 2013
1 person found this review helpful

They have been so helpful with information and contacts with other corneal dystrophy patients. :) A wonderful resource. Highly recommended. :)

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

A lot

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

Definitely

How do you feel you were treated by this organization?

Quite well

When was your last experience with this nonprofit?

2013

October 23, 2012
1 person found this review helpful

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October 23, 2012
1 person found this review helpful

This is a group of people who volunteer to help those with Corneal Dystrophy's. We cover the world, 170 countries have been heard from. Join our Fuch's Friends Community for support, information and help. AND as with a re a charitable organization we always ask for donations to help others. Should you have a charitable mind set and wish information, a DVD of our 2011 Symposium with the top Cornea Surgeons speaking is available with a donation of 75.00 PLEASE HELP

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Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

How much of an impact do you think this organization has?

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2012

October 3, 2010
1 person found this review helpful

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October 3, 2010
1 person found this review helpful

The Fuchs friends group when an invaluable help to me when I first received my Dx of Fuchs Corneal Dystrophy (FCD). The provided written information and access to other web sites that helped me to understand that there are surgical techniques available to correct the disorder, and that I am not destined to be blind because of FCD. This group continues to give support and to identify corneal surgeons who perform the appropriate corneal surgeries.

The Great!

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

Yes.

Ways to make it better...

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

None

More feedback...

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

The information they provide

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

Extremely helpful.

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

Give scholarships to conferences for those of use who might find it difficult financially to attend.

Ways to make it better...

I like everything the way it is.

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

Insufficient funding

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

I have not taken advantage of getting their reasonable priced DVDs from the conferences

How frequently have you been involved with the organization?

One time

When was your last experience with this nonprofit?

2010

October 1, 2010
1 person found this review helpful

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1 previous review
May 21, 2010

I was told I would need a partial cornea transplant. I was terrified. I knew nothing about how to select a surgeon to do this nor what were the symptoms that indicated the surgery was necessary. This... more

October 1, 2010
1 person found this review helpful

I cannot say enough wonderful things about the Corneal Dystrophy Foundation and its Fuchs Friends site. Without the support and help of this website and those who run it and the other members who participate on the site I would never have had the fantastic outcome i have had after two cornea transplants plus related surgical procedures. There is no place else that I could turn to that had the information I needed to help me know when I needed surgery, how to find the doctors I needed and how to cope with the complications that followed. The people on the site had more information for me than my cornea specialist when it came to understanding what my symptoms were and where to go to find the help I needed. They gave me the knowledge of their past experiences plus the support in the present that is priceless. I cannot say enough about how wonderful this group is. There are simply no words to express my thanks to them. Through this group I gained the courage to go for the gold. To get the best doctor out there for my problem and to feel entitled to stand up for myself when I needed to. This is without doubt a superior group and the most valuable support for those with Fuchs Dystrophy. Their work is outstanding. I myself am a former support group developer and facilitator. I have over ten years of experience working with self help groups and advanced training in the administration and development of such groups. I am no longer running my program and am very happy to just be a member who has greatly benefited from the work of the Corneal Dystrophy Foundation.

The Great!

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

Because of this group I found the best information about what I needed and where to go to get the best help there is. They gave good help with no axe to grind.

Ways to make it better...

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

I know they don't allow what they call doctor bashing. But some way that we could let others know of bad experiences in a log form for future people. There are some doctors who are not very good and people be should be warned to avoid them.

More feedback...

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

Finding the help I needed at a time when I was in great distress

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

Kind

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

get a campaign so that the information that is on this website could be found in public libraries and doctors offices world wide. It is an organization that has a world wide base.

Ways to make it better...

At times an off screen facilitator was very harsh and I did not appreciate the unkind words. They were very hurtful and totally unnecessary.

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

Getting people to know about its existence including doctors. The people on this site know more about Fuchs than most doctors.

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

I am tremendously thankful to the unpaid all volunteer staff who work so hard to help others with their problems with this terrible disease. They are gems. Even the one who had some too harsh words to say to me.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

May 21, 2010

I was told I would need a partial cornea transplant. I was terrified. I knew nothing about how to select a surgeon to do this nor what were the symptoms that indicated the surgery was necessary. This group explained to me about the symptoms and what they indicated. It also provided information as to how to find a good doctor and the actual names of doctors that did the procedure so I could check them out and decide who would be best for me. It also provides help and support when I have had problems come up associated with the transplant. You really can't find a better group than this one for helping people deal with the process of corneal transplant.

The Great!

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

By helping me find the information to make the selection of which doctor to use and what kind of procedure to have, they help me get back my eyesight which I was loosing rapidly. The information given here is invaluable for people who have Fuchs.

Ways to make it better...

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

Can't think of any right now.

More feedback...

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

I got help when I seriously needed it in a place that was safe

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

Helpful

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

Do help people around the world learn more about their disease and take charge of it.

Ways to make it better...

The Yahoo interface we use was easier to work with.

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

It needs money to provide more widespread knowledge of its information. People need to know it exists. It really is a major service to people with Fuchs.

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

I am eternally grateful to this organization. I would never have had the access to critical information or the type of support I needed without this group. They have been my lifeline to getting the knowledge needed to treat this illness.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

October 1, 2010
1 person found this review helpful

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October 1, 2010
1 person found this review helpful

The day I was diagnosed with Fuch's, after many weeks of uncertainty, I felt my world had turned upside down. I had never heard of this disease!I was going to go blind! The doctor had told me the news while sitting in the hallway! Matter of factly. With few details. I had to go to work right after that and just could not function. I turned to the internet to find more information and was lucky to discover Fuch's friends. They were an invaluable help in calming me down and getting me to understand the disease. Panic sets in when the doctor gives you bad news. In my case he might have been a great professor but not much of a humanitarian. FF put a friendly face to everything. Restored my peace of life and has been here all the way with instant replies to my questions, shared stories and access to an invaluable, current, website. I have made life long friends after meeting other members at 2 symposiums and keeping in touch through the internet. I can never thank them enough. Br in Calgary, Alberta, Canada

The Great!

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

Continued support.

Ways to make it better...

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

Have a symposium every year instead of every 2 years.

More feedback...

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

Continued support, timely information

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

Wow!

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

Totally finance symposiums, help with research.

Ways to make it better...

nothing

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

none

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

I heartfully thank every founder for their insight and hard work.

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2000

October 1, 2010
1 person found this review helpful

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October 1, 2010
1 person found this review helpful

when I was first diagnoised with fuchs corneal dystropy I was only told that I would go blind if I did not eventually have transplants. I was scared and felt very isolated as I didnt know of any one who had this problem. I attended my first fuchs friends gathering and saw a whole bunch of happy people who had transplants and they could SEE. It took away alot of my fear and as I attended more conferences I recieved alot of education and listened to some of the top specialists in the country. The corneal dystropy foundation is very important to all of us who participate and all those yet undiagnoised. sincerly Mary Oswald

The Great!

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

I read the digests on a daily basis from people reaching out to people for support and information.

Ways to make it better...

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

none

More feedback...

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

going to the conferences..meeting others with Fuchs.

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

very professional, very helpful

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

help people who do not have the funds to get the help they need.

Ways to make it better...

I liked when we use to take a picture of attendees holding up fingers for how many transplants.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

October 1, 2010
1 person found this review helpful

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October 1, 2010
1 person found this review helpful

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.

The Great!

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

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

More feedback...

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

May 31, 2010
1 person found this review helpful

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May 31, 2010
1 person found this review helpful

I had Fuchs' Dystrophy and prior to joining The Corneal Dystrophy Foundation, I had no one who knew about the disease except for my ophthalmologist. After becoming a part of the group, I realized that my ophthalmologist was not current and correct about Fuchs' Dystrophy found my way to a knowledgeable cornea specialist. By then I had blisters on my cornea which complicated the outcome of the overdue DSAEK. Due to complications, I went to one of the top recommended Fuchs' cornea specialists in the US and am now Fuchs' free and my vision is improving rapidly. If I had never joined this great organization, I fear that I would have continued to trust the poor advise I was being given, I would not have been aware of the very best specialists and, I believe, my eyesight would have been significantly compromised. The education, encouragement, and knowledge I received from this group was invaluable. Such small things like how to wash your hair after surgery, were so helpful. I truly believe that anyone in the journey of Fuchs' Dystrophy would benefit greatly from being a member of The Corneal Dystrophy Foundation.

The Great!

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

The most important results for me was the knowledge and encouragement from others who have this rare disease. Reading their stories and following their journey made my journey much easier.

More feedback...

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

Education, information and sharing about my rare eye disease.

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

1) Help to establish ways to provide continuing information to all eye care professionals about Fuchs' Dystrophy. 2) Find a way to reach out to the many suffering from Fuchs' Dystrophy and aren't aware that help is available.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

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  1. Sending an email to clients, volunteers, donors, board members, and other partners with a link to your profile page.
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3 hours of volunteer time for this nonprofit will...

If they lived near San Jose Ca could help us get the Quarterly Newsletter produced (folding, stapling, labeling).