Carcinoid Cancer Awareness Network Inc

Rating: 4.94 stars   81 reviews

Issues: Health, Cancer

Location: 2480 Hull Ave North Bellmore NY 11710 USA

Mission: WE'VE CHANGED OUR NAME FROM CCAN TO NCAN TO BETTER REFLECT THE COMMUNITY WE SERVE. We are a non–profit charity whose mission is to intensify awareness of Neuroendocrine Tumors & Carcinoid Cancer in the medical community and general public around the world. CCAN also assists patients, caregivers and support groups worldwide by providing access to important & updated information about the disease. Through the years CCAN has produced over two dozen conferences. Many are available to view on our website. DVD’s & CD ROMS are available. Our toll free phone support line is answered by a patient and caregiver. Call today for your free information packet. We also provide funding for research into Carcinoid Cancer and other Neuroendocrine tumors.  
Results: 2013- Year in Review Patient Conferences Keep Patients Updated on the Most Current Practices CCAN was proud to help with sponsorship of two Conferences. Jan in San Francisco and the other in Lexington, KY. We were able to produce six regional conferences, (NYC, Nashville, TN, Orlando, FL and Los Angeles, CA, Cruise) thanks to the generous sponsorship of Inter Science Institute. We hosted the first ever conference for Lungnoid only in Nashville and a conference on a cruise. Over 650 patients attended these events. In June we participated in a fundraiser in Charlotte, NC. The ‘2nd Annual Smokin’ Butt Fest.’ What a fun event with great food and prizes. CCAN was there to lend a hand at the North American Neuroendocrine Tumor Society's NANETS Regional Symposium in Nashville, TN and at NANETS' National Meeting in Charleston, SC. Worldwide NET Cancer Awareness Day & NET Cancer Awareness Month 5th Annual 'Strides for Stripes Zebra Walk.' On November 2nd over 500 people came to walk in support of NET cancer patients at our 5th Annual 'Strides for Stripes Zebra Walk.' It was an exciting day, with an antique fire truck and the WALK Radio Team on hand with a prize wheel. A special Thanks to the band Undercover who entertained us again this year. Each walker received a tee shirt, bottled water, snack bars, and hand warmers and a raffle ticket for a chance to win a 3 foot tall stuffed zebra. They were fed a delicious lunch of heros, chips and apples. NYS Proclamation 2013 New York State has declared November 'Carcinoid/NET Cancer Awareness Month' each year since 2006. It is challenging to find support for NET Cancer Awareness Initiatives and we want to thank the state of New York and the governors for their tremendous support through the years. Why not get on board and have your state, city or town declare a 'NET Cancer Awareness' time every November! 10th Annual Celebration of Life Gala November 9, 2013 was another wonderful evening- our 10th Annual Celebration of Life Gala. With over 250 people in attendance it was a great success and a lot of fun. People had chances to win AWESOME prizes. For the 2014 National NET Cancer Patient Conference in Charlotte, NC. Conference dates are September 18 - 20. CCAN, Dr. Eugene Woltering will work together to produce another amazing conference for patients and caregivers. You'll get to see 20 experts talk about NETs and have 2-1/2 days to network with others who know what you're going through! Rest assured that our Goal is Making Life Better for NET Cancer Patients. CCAN's board & officers are committed to assisting NET patients & to helping find a cure for carcinoid cancer. We field an experienced team focused on quality and we're proud to give our time as unpaid volunteers, keeping administrative costs low and allowing most of the funding to go into the programs. Visit www.carcinoidawareness.org.
Target demographics: Neuroendocrine Patients and their Families
Geographic areas served: Locally, Nationally, & Globally
Programs: We have a toll free hotline opened 7 days a week 9 am - 9pm EST. The phone is answered by a Patient or Caregiver at all times. We send out free information packets to anyone interested.
2015 Top-Rated Nonprofit
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EIN 20-1544357
866 850 9555
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Community Reviews

Rating: 5 stars  

1 person found this review helpful

THE CARCINOID CANCER AWARENESS NETWORK helps change lives of those living with carcinoid cancer. They help to educate, motivate, and emotionally support patients and their families. My experience with the carcinoid awareness network has been nothing but positive. They have help me to find doctors better understand my diagnosis. They've also help me to communicate with other people but the same diagnosis and find support.

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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1 previous review
Rating: 5 stars  

2 people found this review helpful

When I was told I had carcinoid go on the internet and look it up, I found all kinds of information ,some trying to sell me things. I was scared and upset. Carcinoid as I was told was rare and no one knew very much about it. All I could think was what now? I went back to the internet and found Carcinoid Cancer Awareness Network with a phone number. I called and was sent all kinds of up to date information. This information has been lifesaving. CCAN has and is always there for me to this day as I head into 4 years past diagnois. I don't know how I would manage without them.

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

When ever I have a question all I have to do is call. I am sent information on events where I have learned new studies and the results and how to monitor carcinoid.

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

I really do not know of any changes I would make. They have been wounderful.

 
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Rating: 4 stars  

2 people found this review helpful

This cancer is such a rare kind that it is hard to find up tp date information on new research. CCAN helps to provide such information. It also provides contacts with others who have the same cancer. The national conference sponsored by CCAN was very informative and worthwhile attending.

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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Rating: 5 stars  

2 people found this review helpful

After many years of not having anywhere to turn, or real information on carcinoid cancer/nets. I found the CCAN and i got all the real information about my cancer, that not only myself but my drs could refer to. LIFE SAVERS... sums it up

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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Rating: 5 stars  

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

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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Rating: 5 stars  

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.

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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Rating: 5 stars  

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.

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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Rating: 5 stars  

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!

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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Rating: 5 stars  

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.

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

 
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Rating: 5 stars  

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!

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

 
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Rating: 5 stars  

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.

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

 
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