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69 Reviews
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June 30, 2013
1 person found this review helpful

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June 30, 2013
1 person found this review helpful

I can not say enough about this wonderful organization. I went to the first CCAN Lung carcinoid conference in Nashville, TN in April 2013. I met the founder of CCAN, her husband, and her family, all who work tirelessly for carcinoid awareness and the support of carcinoid patients. Before the conference I had been sent a packet of materials including DVDs of past conferences. This information did much to educate me about carcinoid cancer and to give me a sense of hope and renewal. I was no longer alone. Carcinoid cancer is very rare and let's face it most people who don't have it, don't want to talk about it. CCAN Talks. CCAN listens. CCAN has made a positive difference in hundreds if not thousands of people's lives because of their dedicated advocacy. They have made information available to cancer patients, helped to reeducate the medical community about this disease and banish the liaise faire attitudes from the past. One last point, they have also found and built relationships with the top carcinoid/NET doctors around the world. Many of these doctors give of themselves and their time to carcinoid awareness, research, diagnoses, and care. Please consider giving to CCAN. They are a great nonprofit.

Ways to make it better...

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

Absolutely nothing!!!

More feedback...

Was your donation impactful?

Definitely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

When was your last experience with this nonprofit?

2013

June 12, 2013
4 people found this review helpful

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June 12, 2013
4 people found this review helpful

I have been working with the CCAN organization for many, many years. The educational services and information they provide to patients and caregivers is invaluable. They should be commended for the work they do and the countless hours of their time they give! I would not hestitate to donate funding to support this wonderful organization. Continue the great work Maryann and Robert! You are truly inspirational.

More feedback...

Was your donation impactful?

Definitely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

When was your last experience with this nonprofit?

2013

March 20, 2014
1 person found this review helpful

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1 previous review
April 26, 2013

Being diagnosed with carcinoid cancer is unlike facing other cancers....there are no familiar ribbons, rallies or races for support and connection. Most doctors misunderstand carcinoid and even the c... more

March 20, 2014
1 person found this review helpful

CCAN is such an amazingly helpful & important nonprofit! Cases of carcinoid cancer increase daily yet so little is known about this unpredictable disease. As a patient, my misdiagnosis of cancer for nearly a DECADE and doctors with grossly outdated knowledge, is sadly the common experience. Even after carcinoid is confirmed, most don't know what to do so they treat it like other more commonly understood cancers - which can be deadly to carcinoid patients. CCAN's work reaches far across the realm of carcinoid....24 hour patient & caretaker hotlines, free mailed info packets, support group funding, social media awareness, educating patient, public, pharma, and medical teams through innovative seminars and dozens of conferences each year. CCAN also coordinates large donations toward research by working with pharma. There is no CEO or other salary here, CCAN is actually a very special family dealing with carcinoid cancer themselves and working passionately to bring awareness, help and HOPE to thousands every year.

Ways to make it better...

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

Create unlimited funding for all they do!

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?

2014

April 26, 2013
5 people found this review helpful

Being diagnosed with carcinoid cancer is unlike facing other cancers....there are no familiar ribbons, rallies or races for support and connection. Most doctors misunderstand carcinoid and even the cancer.gov and American Cancer Society websites give dangerously inaccurate information!

Thank God for CCAN! Despite being a small organization, they continue to achieve incredible results with things like their free hotline where you can talk directly with an experienced patient/caretaker team, wonderful information packets mailed upon request, helping nationwide carcinoid support groups, and doing so many other things nobody else does for carcinoid cancer patients!

I'm a lung carcinoid cancer (aka "lungnoid") survivor who started a facebook support group and wanted to work with my wonderful carcinoid oncologist (Dr. Eric Liu) to hold the first-ever lungnoid conference. Lung carcinoid is even more rare and there is VERY little support for us. No profit to be made from us. But CCAN stepped in, and not only funded and produced an AMAZING, history-making Lungnoid Conference at Vanderbilt University in Nashville (April 2013), they paid for the only lungnoid expert in the world, Dr. Dan Granberg, to come in all the way from Sweden!

CCAN made it possible for Dr. Granberg to see patients in Nashville for an entire week, then help more than 100 attendees at the Lungnoid Conference with his presentation and interactive Q & A session. For twenty dollars, attendees received not only a full-day conference devoted just to lung carcinoid and the opportunity to learn from and interact with a team of caring experts, but a lovely breakfast AND lunch, beautiful advocacy messenger bag filled with information and awareness goodies, a spiral-bound notebook with all the Powerpoint slides from every presentation at the conference, and most importantly, a chance to connect with others facing this unique and lonely cancer.

CCAN does not have a corporate staff making large salaries. This is a FAMILY doing all these amazing things. A family with a mom who got carcinoid cancer and decided that nobody else would face the struggles alone like she had. That mom is Maryann Wahmann and she has singlehandedly changed the face of carcinoid cancer with her amazing determination, energetic personality, and compassionate spirit.

Making a donation to CCAN isn't going to line the pocket of a salaried employee, it's going to pay for printing costs and stamps for packets to be shipped out weekly to newly diagnosed patients, for conferences to educate patients as well as medical communities, for advocacy and awareness (did you know CCAN is responsible for the zebra-stripe cancer ribbon for carcinoid?) - for things that really matter and truly make a diference for every carcinoid cancer patient and anyone who cares about them.

Thank you, CCAN, for being the family and face of carcinoid awareness, for helping to educate the world that carcinoid IS cancer, and that nobody facing it is ever alone! xoxo :)

More feedback...

Was your donation impactful?

Definitely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

When was your last experience with this nonprofit?

2013

June 1, 2011
1 person found this review helpful

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June 1, 2011
1 person found this review helpful

I know one of the founders of this organization from high school. Much to my surprise the husband of a colleague at work has this specific (and rare) cancer. There are no coincidences. That CCAN came into my life so that I could pass on the information to my colleague has meant so much

CCAN , was able to give this family the information they needed to make difficult decisions about their future.

I have participated in the Walk and the Gala this past year. Bob and Maryann are so warm, knowledgeable and supportive. The outreach they do with the public, corporations and hospitals is invaluable.

The Great!

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

In passing on information to a colleague whose husband has this cancer.

Ways to make it better...

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

Fund them with more money so they could do more outreach and expand.

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