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33 Reviews
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October 13, 2013

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October 13, 2013

My husband was misdiagnosed as cidp 8 years ago. He has familial amyloidosis which is a rare form of
Amyloidosis and is a heredity disease in which it attacks your nerves and organs. It starts with sharp electrical pains in your feet, drop foot, and then numbness and eventually lose all use
of your body parts. We attend the Chicago support meeting in every other year. Muriel heads the support meeting and we could not do without her.we need a cure. For this terrible disease in which most people And some doctors have never heard of.

Ways to make it better...

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

Start some meetings for the familial group closer to Knoxville tn. Right now we are the only ones from tn.who travel to chicagoI am sure there are others in Tennessee who have this disease and either have been misdiagnosed or cannot travel that far.patients that have the heredity have a harder time with traveling too far. We will travel as long as we can.

More feedback...

Will you volunteer or donate to this organization?

Definitely

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

Life-changing

When was your last experience with this nonprofit?

2013

August 27, 2013

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August 27, 2013

Several years ago I was diagnosed with having localized lichen amyloidosis. Thanks to meeting this group I was able to learn much about the disease and the other more serious forms of amyloidosis. Ms. Muriel Finkel, volunteers, members and friends have been giving so much of their time making this an incredible support group. Under Muriel's leadership the group has made available latest information about this very rare disease. Muriel has contact with amyloidosis experts all over the world. The group has had meetings at various locales around the country with many physicians donating their time flying in to educate, disseminate information and answer detailed & intricate medical questions. My son who is a physician is also quite impressed with this group and the leaders' dedication. Thanks, Muriel and all the volunteers for making this one of the very best rare disease support group.

Ways to make it better...

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

None

More feedback...

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

January 27, 2011
1 person found this review helpful

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Review from Guidestar
January 27, 2011
1 person found this review helpful

I needed help finding a center of excellence and support. The toll free hot line helped me so much as did the support meeting. I was directed to a center specializing in amyloidosis and the date for my appointment was even speeded up. I achieved as much peace of mind that is possible with this disease and appreciate them more than I can say.

The Great!

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

the area of support, help, advice, education and peace of mind.

Ways to make it better...

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

ask them to have meetings in every state and know that would require they get more donations.

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