CARCINOID CANCER AWARENESS NETWORK INC

Rating: 4.99 stars   80 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 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.

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1 previous review
Rating: 5 stars  

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.

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

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!!

When was your last experience with this nonprofit?

2013

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Rating: 5 stars  

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!

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

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Rating: 5 stars  

1 person found this review helpful

My husband was diagnosed with small intestine NET two months ago. We attended the CCAN conference in Michigan a few weeks ago. Even though the information was overwhelming and sobering, we felt far better prepared to face this new reality. The information on the CCAN website has helped us to know what kind of medical help that we need. We are so thankful for this amazing resource!!

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

Make sure it is well-known.

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

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Rating: 5 stars  

3 people found this review helpful

The information and education I have received from CCAN has been truly life saving. I had little to no access to resources in my medical community about Carcinoid Cancer of the lung. I am a survivor because I connected with the right people at the right time. CCAN deserves every honor and award for the invaluable support they provide to Carcinoid Cancer patients and our families. God bless them and their outstanding work.
Icela Gonzalez,
San Diego, CA

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

None!

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

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Rating: 5 stars  

3 people found this review helpful

It was in 2009, 4 yrs after my husbands dx, I learned about CCAN. Many things regarding follow up, I was not aware of, such as labs, scans etc. the organization has been such a tremendous help, not only to us, but many others. We have been to several conferences both regional and national. I know at any given time if, I have a question or concern I can pick up the phone and call Maryann! CCAN "ROCKS"

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

Nothing

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

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Rating: 5 stars  

4 people found this review helpful

After diagnosis, on the operating table, with a lung carcinoid tumor I was told it was not really cancer, it was out and go and enjoy my life. While in substantial post- operative pain for many months, I had to ask to see an oncologist and pour over the Internet to find out information and help. CCAN was a wonderful source of information and led to other ways to contact the carcinoid community, providing much needed advice ( it is cancer!) and how I should be followed from now on. Recently, I was lucky to be able to attend the world's first patient lung carcinoid conference at Vanderbilt University TN and hear talks from one of the very few Us experts and the world expert on this disease. it also made all the difference to be in a room of people who 'get it' , when faced with a rare disease. This event would not have been possible without the hard work, organization and support of the wonderful people at CCAN. They are doing a fantastic job, Thank You!

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

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Rating: 5 stars  

3 people found this review helpful

I am forever grateful for the many services of CCAN! After being diagnosed with Carcinoid CA in January, I began researching online to learn as much as possible about my cancer that most people have never heard of. The greatest "hit" that I made while "Googling" was CCAN. I did a request for information and in a few days received an amazing package full of information, DVDs and most importantly a DVD of a presentation by Eric Liu, MD of Vanderbilt-Ingram Medical Center. I do have a local oncologist who is currently treating me and he is very excited to learn about Dr. Liu.

There was also a schedule of many CCAN events and I went to the recent conference in NYC which CCAN organized. I learned so much but was particularly impressed with Dr. Eric Liu, Maryann and Robert Wahmann.

Maryann Wahmann and her organization are responsible for me attending this life-changing event. I am now a patient of Dr. Liu and will be traveling to Nashville for treatment and surgery by him.

This is an exceptional organization and people can contribute to it knowing that their contribution will be used wisely to help Carcinoid Cancer patients.

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

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Rating: 5 stars  

3 people found this review helpful

As a 3 year NET patient, I was not aware that I should have been followed more by my doctors. Through CCAN's awarness network and the programs they provide, I learned that I should have been more closely followed by my oncologist.
I am now in the process of getting the medical follow through that I should have been receiving for the past 3 years. This is truly a life changing event for me and it wouldn't have been possible without CCAN and the wonderful work they do and provide. They made me realize that I am in charge of my medical care1
Thank you so much for all you do!
Ronda Bogani Ayala, RN

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

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Rating: 5 stars  

3 people found this review helpful

When I was first diagnosed with carcinoid cancer, my oncologist told me there was nothing to be done but an injection once a month, then maybe clinical trials when that quit helping. I was reluctant to search the internet and pick up false hope chasing windmills and fake cures. But, I finally decided I had to turn to the internet, because I was getting no information about the disease from my doctor. I found CCAN, requested their information packet, watched videos from the conferences they put together. I was amazed at just how much more could be done to help me than what I had been told. And I have sought out that help. I am so very grateful to CCAN for all they do.

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

Was this review helpful?