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69 Reviews
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October 1, 2012
2 people found this review helpful

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October 1, 2012
2 people found this review helpful

CCAN was there for me when I was first diagnosed with carcinoid cancer. They actually answered the telephone in person and spoke with me about where to find additional information and how to research treatment options. They continue to serve the carcinoid community and do an outstanding job.Thanks to CCAN. Lesley C

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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

October 1, 2012
1 person found this review helpful

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October 1, 2012
1 person found this review helpful

I just attended the CCAN Conference in New Orleans and this was the first time I have personally met anyone from this dedicated group , although I had heard about their work from my oncologist. What a first impression they made and they kinda messed up because they must have thought they had already knew me. At least that is the way I felt after the first hour or so. They were terrific! And , I could not believe some of these individuals stories concerning Carcinoid. I found out some were patients like myself , at all stages of this life sapping disease, but they were mostly , I believe just concerned activists, family members and dedicated workers in the field trying to do their utmost to help support anyone that needed that support after getting a diagnosis. I learned that Carcinoid patients , more correctly called NET Patients or Neuro Endocrine Tumor Patients are self described ZEBRAS ( our distinguishing logo)- Another shade from all those who suffer in all too many cases -terminal cancer. Not many people especially doctors and researchers even know we are "out there" . Our zebra stripes camoflauge us in the shadows of the effort to find a cure for cancer. And often that more common cancer research does'nt help us directly. These dedicated workers in CCAN are out there spreading the word and educating individuals like me on how to simply use all the resorces out there and each other to stay alive . It can be easily seen how dedicated and selfless CCAN is in doing this VITAL work. Please support them in any way you can . If you are a foundation, a medical facility doing research or a Medical School I urge you to look for any way you can help. I feel truly grateful for what I learned last weeik and for all the materials and speakers that had to be gathered together for such an event. I don't feel so much alone now. Please help in any way you can -just ask CCAN they know.

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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

September 30, 2012
1 person found this review helpful

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September 30, 2012
1 person found this review helpful

My 43 year old husband was diagnosed this April (2012). Shock, saddness, and sprinkle on top that it is a cancer that no one I know has heard about. The great thing about CCAN is they fill the void when someone needs help now.... not in a week but just a phone call away. All weekend every day... they answer the call... They deserve to be recognized for all the wonderful work they do... I would gush even more but my husband is in the hospital and I am working on little sleep.

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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

September 8, 2012
1 person found this review helpful

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September 8, 2012
1 person found this review helpful

I was diagnosed with carcinoid cancer in 2010. This group is quite helpful in putting on really informative conferences where the most experienced doctors speak to patients about neuroendocrine cancers. I went to a conference in Long Island last year and it was very helpful in understanding this disease.

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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?

Very Well

When was your last experience with this nonprofit?

2011

September 5, 2012
1 person found this review helpful

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September 5, 2012
1 person found this review helpful

When I was first diagnosed I had no idea what this type of cancer was and what to expect. From this group the information was complete and the people were guenuine in the caring nd desire to fil me in and answer all my questions. Without them I would have blindly followed care plans made by medical personnel unfamiliar with the disease and would be far worse off than I could ever imagine. It's been almost 2 years since I first sought their advice and they ae still thee when I need them. They are the best!

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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

August 16, 2012
1 person found this review helpful

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August 16, 2012
1 person found this review helpful

For those of us in the Carcinoid Cancer/NET community it has often been difficult to find information and support. However, Carcinoid Cancer Awareness Network (CCAN) and Maryann & Bob Wahmann have made it their priority to provide this to us. They have dedicated their time and much more to bring mini seminars to regions across the United States, they have used their 501c status to receive grants and funds from sponsors for numerous patient/caregiver conferences, and they have made available informational literature to help us educate ourselves & others about this chronic disease. As a support group leader, CCAN has also made available to me numerous promotional items such as Zebra pins, Carcinoid/NET bracelets, and stuffed zebras along with educational brochures. These have been wonderful to have for my support group meetings. CCAN also sponsors numerous fundraisers and awareness (as their name suggests) activites. Education & awareness of Carcinoid/NET is the key and CCAN plays a hyge role in making that happen.

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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?

Very Well

When was your last experience with this nonprofit?

2012

August 15, 2012
1 person found this review helpful

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August 15, 2012
1 person found this review helpful

CCAN has been a great source for information and support in the past. They have always been prompt and thorough in any requests I have made. They are truly working to increase awareness and early detection of this disease!

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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?

Very Well

When was your last experience with this nonprofit?

2012

August 13, 2012
2 people found this review helpful

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August 13, 2012
2 people found this review helpful

I'm a carcinoid patient, stag 4, and have been helped by information provided in the mail, and information on a telephone conference with experts speaking about our cancers. I'm very thankful for all the information and help I got from this group.

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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?

Very Well

When was your last experience with this nonprofit?

2012

August 13, 2012
2 people found this review helpful

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August 13, 2012
2 people found this review helpful

I woke up from a routine surgery only to find out the doctors found I had Carcinoid Cancer. From there, pretty much all roads lead to "Carcinoid Cancer Awareness Network". I don't know how you could have this cancer and not been helped with knowledge, support and genuine caring hearts. When I was diagnosed, like so many others I didn't know where to go for help. CCAN helped me with information, slowing me down on decisions and taking a step back to breathe. I felt like there was HOPE. That was the first thing I needed to know. Leah

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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

August 12, 2012
1 person found this review helpful

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August 12, 2012
1 person found this review helpful

i was diagnosed 10/2009 and the local doctors where I live didn't seem to have enough knowledge on Carcinoid Cancer. They gave me approx. 6 months. Maryann at the Carcinoid Cancer Awareness Network sent me the information I needed to understand this disease, educate my local doctor and know that all hope was not lost. Thru the network I found a Carcinoid specialist/team that is helping me.

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?

2012

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