Oops! You must enter a search term greater than 3 characters.

Invite reviews

Invite friends and colleagues to share their experiences with this nonprofit
76 Reviews
1234.986845
Write A Review
March 20, 2014
1 person found this review helpful

more

March 20, 2014
1 person found this review helpful

The individuals that run the Carcinoid Cancer Awareness Network, Inc. (CCAN) are amazing, talented, and compassionate. The level of assistance they provide to patients of this rare disease goes well beyond expectation. How many groups do you know that you can call day or night, 7 days a week? In addition to one-on-one counseling, they show their sophisticated organization skills by holding dozens of conferences to bring the relevant parties together. They helped organize the first ever lung carcinoid conference, including bringing the world's top expert on this disease to the US from Europe. Imagine, prior to the year 2013, there had never been such a gathering. Further, they show their dedication to helping to find a cure by raising funds for doctors and researchers. Individuals who contact CCAN can have confidence that they will be given accurate and timely information to obtain the best prognosis possible.

Ways to make it better...

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

Provide them with more funding so they could expand their services

More feedback...

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?

2013

March 20, 2014
1 person found this review helpful

more

March 20, 2014
1 person found this review helpful

This organization made it possible to have the first conference for lung carcinoid patients. It was so helpful because information for us is very scarce and the best specialists were brought in.
March 20, 2014
1 person found this review helpful

more


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

March 19, 2014
1 person found this review helpful

more

March 19, 2014
1 person found this review helpful

Hello, This organization is amazing. They were so helpful to me. They sent me very imformative information in the mail along with very educational DVDs to watch regarding neuroendocrine cancer. I'm very thankful for them.
March 19, 2014
1 person found this review helpful

more

March 19, 2014
1 person found this review helpful

I had a carcinoid cancer in 2011 and underwent surgery to have it removed. After 117 days in the hospital and undergoing 15 operations I was sent home and told I was cancer free and basically only needed routine scans. Needless to say, I was very sick and very frightened with no one or anywhere to turn to for answers to my questions.

I found CCAN on line and I was able to reach out and find not only answers but support. CCAN is truly an outstanding support group which offered me encouragement when I truly felt overwhelmed by my health conditions. Through CCAN I have bonded with people who are going through similar situations, sharing our bad and good days. The CCAN website has valuable information about Carcinoid and NET Cancer, information that most doctors are not aware of. In addition, CCAN mails a packet to new patients which has much information about Carcinoid and Nets. It is very helpful in orientating new patients and leading them to be proactive in their care.

Carcinoid and NET Cancer is a rare a barely understood disease and patients can be confused who and where to turn to for answers. Frankly, as a patient who was told go home and do the best you can, I knew there had to be another answer. CCAN helped me find those answers.

Ways to make it better...

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

I think they are a great but I know they could use more assistance.

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

March 19, 2014

more


1 previous review
June 22, 2011

CCAN is the result of a truly dedicated team focused on the support of Carcinoid/Neuroendocrine patients and their families. more

March 19, 2014

For years, CCAN has been there for Carcinoid/NET patients, and they strive steadfastly to educate the medical community about these orphan tumors. CCAN is there for you...they deserve to have all of us in their corner as well.

Ways to make it better...

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

Emphasize the need to fight insurance carrier denials and help prevent patient/family bankruptcy by helping to negotiate with drug companies which provide the costly medications.

More feedback...

How does this organization compare with others in the same sector?

Very Well

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

Life-changing

Will you recommend this organization to others?

Definitely

When was your last experience with this nonprofit?

2013

June 22, 2011
1 person found this review helpful

CCAN is the result of a truly dedicated team focused on the support of Carcinoid/Neuroendocrine patients and their families.

The Great!

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

I've participated in a patient-oriented conference sponsored by CCAN.

Ways to make it better...

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

Perhaps the single suggestion one could make would be to ensure that NET physicians are available to discuss specific patient questions as they are raised. I recall reading with some pain the story of a patient who travelled to South America for surgery for a Carcinoid lesion of the heart when 5 prior patients with a similar problem had been managed with targeted nonsurgical therapy by the Mt. Sinai team in NYC. This type of patient could benefit from appropriate physician input at a critical time.

March 19, 2014
1 person found this review helpful

more


1 previous review
August 13, 2012

After being diagnosed I struggled to understand this cancer. I was told about the carciniod cancer awareness site. So thankful for all the help. When I requested a packet of info. It arrived with... more

March 19, 2014
1 person found this review helpful

The packet of information I received has been the greatest help In battling this cancer. I have taking copies to all my local doctors to insure proper care. With out it they didn't know how to treat this cancer. It's the first place a newly diagnosed person should go for information.
August 13, 2012
1 person found this review helpful

After being diagnosed I struggled to understand this cancer. I was told about the carciniod cancer awareness site. So thankful for all the help. When I requested a packet of info. It arrived with in a couple of days. Thanks again.

More feedback...

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

October 16, 2013
1 person found this review helpful

more

October 16, 2013
1 person found this review helpful

Those of us with Carcinoid Cancer know how hard it is to get correct info and to be diagnosed. Even after we are diagnosed, most doctors do not know how to treat us. With all of this going against us, CCAN is there to get us correct info and to let us know which doctors know how to treat this rate disease. They are just available to talk if that is what we need.

This non profit organization is the best!!

More feedback...

When was your last experience with this nonprofit?

2013

July 1, 2013
2 people found this review helpful

more

July 1, 2013
2 people found this review helpful

What can I say about CCAN, is that first hand Maryanne, Founder of CCAN has changed my life along with the treatment regimen I am now receiving. She has also has helped my children, siblings. cousins, as well as the Carcinoid community, since I am of the rare breed with a family history of Carcinoid. Maryanne directed and urged me forward to attend my first CCAN meeting in Indiana a year ago, in order to learn, investigate and find the correct path of where to be directed with my own personal care. I am truly grateful for her and CCAN's direction. My cancer care now has the correct coarse of action to keep me as well as possible. Thank You, Maryanne!...... Thank You CCAN!

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

June 30, 2013
1 person found this review helpful

more

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

Filter by reviewer role:

Support This Nonprofit

Help this nonprofit get more reviews

5 tips for getting reviews

5 tips for getting reviews...

  1. Sending an email to clients, volunteers, donors, board members, and other partners with a link to your profile page.
  2. Putting a link on your Web site
  3. Including a link in your email newsletter
  4. Putting a link in the signature of your email
    Putting a link on your facebook page and status updates
  5. Tweeting out a link to your twitter followers