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Carcinoid Cancer Awareness Network Inc

Rating: 4.94 stars   81 reviews 6,030

Nonprofit Issues:

Health, Cancer

Address:

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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866 850 9555
www.netcancerawareness.org

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Reviews for Carcinoid Cancer Awareness Network Inc

Role: General Member of the Public
Rating: 1 stars  

They don't answer emails and they block patients from their forum site without explaining why.

 
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Rating: 5 stars  

This is a great group that sponsors conferences and gives patients information. They also help out as a patient advocate for people in need of that type of care. All of the information is useful and can alter the way a patient treats their disease. I am a patient and have been to several of NCAN's conferences. They are well run and a great way to meet other patients and see the doctors who treat this disease. I'd highly recommend a new neuroendocrine cancer patient get involved with this group.

 
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1 previous review
Rating: 5 stars  

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.

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

 
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Rating: 5 stars  

I am approaching my 4 year anniversary of my Carcinoid/NET surgery and I am thankful everyday for the people who have offered me encouragement, shared knowledge, and helped educate me about this devastating form of cancer. Carcinoid Cancer Awareness Network is at the top of my list of people/groups to thank. May 14, 2011, I was in the emergency room with a blockage in my small intestine which required surgery. I was shocked to learn the blockage was caused by a malignant carcinoid tumor but was assured the Doctor removed all the tumor and I would be fine. After all," this is a slow growing tumor, it is the best type of cancer to have and I would feel better than I had in years".
I went home and kept waiting to feel better, I waited for one and half years and I was not improving, if anything I was experiencing more problems. I started searching for information and came across Carcinoid Cancer Awareness Network and I contacted them immediately.
I can not begin to express what a difference that phone call made in my search for answers. CCAN talked with me, not at me, and provided information about Carcinoid/NET, helped connect me to support groups and mailed me an informative packet.
This past September I attended a Carcinoid/NET Conference sponsored by CCAN and was in the company of other patients and the top Doctors who specialize in Carcinoid/NET cancer. I was amazed at the low cost to attend this conference, how organized it was and how much I learned. It was very clear the speakers were dedicated to making a difference in the quality of life and life span of patients.
CCAN is available to us every day and offers a warm voice and caring person to answer our questions, help soothe our nerves and point us in the right direction. I cannot say enough about what a wonderful source CCAN is for people living with a rare type of cancer where there is little awareness.

 
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1 previous review
Rating: 5 stars  

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.

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.

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

 
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Rating: 5 stars  

The free info packet gave me much more detailed and accurate info than my oncologist. It almost certainly saved my life. I am very grateful this organization exists.

 
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Rating: 5 stars  

I was first diagnosed with Neuroendocrine ( Carcinoid ) Cancer in 1999. I was so lost and and no where to turn for many years. Then I found NACAN. I first came in contact with Maryann in a support group. I was trying to soak up and learn as much as I could. NCAN and Maryann really guided me in the right direction. With out them I would have excepted my grim fate and would not have gone after one of the few specialist we have that saved my life. I am stable now and a support group founder of 500+ members. I send every new member in my support group to NCAN for their amazing new patient packet that ONLY NCAN offers. Over the past 3 years of running the support group, NCANs guidance has helped sooth so many scared patients (and families) and pointed them in the direction they need. NCAN continues to reach out to the community to bring awareness and information to not only patients but Doctors. Neuroendrocine is such a forgotten and misdiagnosed cancer that a lot of the time it is found too late. I truly believe that this organization has opened the eyes of our community to hope. I became an independent advocate because of the kindness and support I was shown by this group. I will continue to pay it forward to others til my last breath. Thank you Maryann and NCAN for giving me the courage and knowledge to keep fighting this battle.

 
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Role: Professional with expertise in this field
Rating: 5 stars  

Carcinoid is such an orphan disease that not many patients nor their physicians know much about it. As a result, diagnosis is always delayed for years. Worst of all, once the diagnosis is made, the treatment offered by the treating physician is often outdated and passive. For years, the fight for carcinoid has been uncoordinated, disorganized, dysfunctional and extremely ineffective. Patients suffered from lack of correct information or receiving outdated wrong information. Physicians who are interested and specializes in the field also suffered due to the lack of forum to express and educate patients or each other. Maryann, Bob and the whole family has made such a dramatic improvement for patients and carcinoid specialists as a whole by different means through the nonprofit organization CCAN, which they established and are absolutely devoted to. Throughout the years, CAAN has provided patients with support, information, and guidance by a 24/7 phone consoling, printed teaching material, and educational videos on an individual bases. On a grand scale, CCAN organizes regional and national patient conferences by gathering leading experts in the field to provide patients with an in-depth overview of their disease and the available updated treatments. In addition to help patients, CCAN also supports physicians who are interested in this orphan disease with funding for research and educational process. More importantly, they are always there for physicians who are interested and devoted to carcinoid treatment. MaryAnn, Bob and their family has been the most important ally’s for us who are committed to the tough fight against this intriguing disease. CCAN has an undeniable contribution of the progress made in the fight against carcinoid in this country and North America! The Wahmann’s family entitled the recognitions for their efforts/contribution and CCAN deserves all the financial support and funding from our generous general public. Yi-Zarn Wang DDS., PC., MD., FACS. Professor of Surgery, LSUHSC-New Orleans.

 
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Rating: 5 stars  

We are almost three years into our journey with carcinoid cancer and couldn't have done it with CCAN now known as NCAN. Thanks to Maryann and her family, many families have been given the knowledge and resources to deal with their cancer. They are truly an amazing family and have helped so many. They make us feel like we are not alone. If we have a question, we just call and they are always there for us. From conferences, to cruises, to walks, CCAN is always there....We are so lucky to have them in our lives.

 
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1 previous review
Rating: 5 stars  

1 person found this review helpful

A year and a half ago, my husband (the zebra) and I (the caretaker) were at our wits ends. Four different doctors told us there was nothing we could do and just take the wait and see approach. I kept researching only to be told "we don't know enough about this cancer". One day, I decided to do something that I just wasn't sure about but I figured what the heck. I went onto facebook and typed in "carcinoid cancer". I found this group called the Carcinoid Cancer Awareness Network and told our story. Within minutes, I received a response from a woman, named Maryann, who would change our lives for the better. She gave me her phone number and asked me to call her. I immediately did and finally I felt someone could understand and possibly help us. Maryann gave me an email address to a doctor in New Orleans and told me exactly what to do and what would happen. It went down exactly as she described. Within a short period of time, we received all this helpful information from Maryann and within weeks we were in New Orleans meeting an unbelievable team of doctors. My husband and I now were given a new approach and a new way of looking at this. This is truly an amazing foundation that has helped so many patients and their families through their rough and uncertain times and has brought us all together. Maryann, as well as her family and the Carcinoid Cancer Awareness Network all let us know that we are not alone in this battle whether it be with a phone call, email, conferences, walks or galas. The Zebras and their caretakers are so lucky to have this wonderful foundation in our lives.

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

 
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Rating: 5 stars  

I was diagnosed 8/8/08 with Carcinoid cancer. Doctor told me well if you had to get cancer this is the one to get. I am saying he is crazy. At the same time he said it was terminal 12 tumors in liver. They may exend my life a few years. It was inoperable and they would not look for my primary tumor. Even if they found it would not take out. This was a very rare cancer. He was saying no hope just doom and wait to die. Just felt loss hopeless. Top it off had to go to work and see about my kids. Unbelievable each doctor I had at that time said best cancer to get if you had to get. They had no information on disease and did want it. Just went by limited information they had and just passed me around.
There was no plan since doctor said terminal.
Well time passed searched for information and found ICAN in Indianapolis. I learned of ICAN through them. For website I learn exactly what I had and found a Doctor at Ohio State University, Dr. Manisha Shah. She made me realize I can live and focus on that. I did and 2012 they removed my primary tumor in ileum, gallbladder, appendix, most of my left lobe of liver. She discontinued Sandostatin and I am still here. Some times I forget I have carcinoid tumors in liver. The point I want to stress how important NCAN is so old and new patients. It makes a difference in the quality life and your health to have correct and updated information. NCAN provides that.

 
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Role: General Member of the Public
Rating: 5 stars  

I was diagnosed in June 2013 after having surgery for an unrelated issue. My carcinoid was found during surgery. I spent 15 months doing the wait and see approach that my oncologist recommended. I had a sister-in-law that was going to Sloan- Kettering and she talked to her doctors about my situation. They did not recommend the wait and see and gave her several internet sites to research. I found CCAN and they where awesome. At the same time they where sponsoring a conference and I signed up for that. They had the best doctors in the nation speaking at this conference. I gained so much knowledge from this conference. It changed my life and I am now proactive and have the tools and guidance I need. This is truly a "Nonprofit" They send out a wonderful packet of information to those patients that contact them. All phone calls are returned any time of the day or night. Great organization. Thanks, Teresa

 
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Role: General Member of the Public
Rating: 5 stars  

2 people found this review helpful

I was newly diagnosed in June 2014. I was able to attend a conference put together by this wonderful organization in September. I was absolutely amazed by the amount of information I was able to gather. My husband and I were very impressed by the gifted speakers and the flawless execution of the daily events. This was done over a course of 3 days. I cannot imagine the work that must have gone into this event. We left with a better understanding of my disease, a plan for treatment and, as a bonus, many new friends. A big thank you to these lovely people who work tirelessly for all of us. I am so very grateful!

 
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