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

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

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.

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.

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

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1 previous review
Rating: 5 stars  

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.

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

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

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.

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

4 people found this review helpful

I can't say enough good things about CCAN. They are dedicated to the increased awareness of neuroendocrine and carcinoid and going beyond the normal call of duty to help people. They are an amazing resource and an amazing family. I am honored to call them colleagues and friends. Together we will help people all around the country learn to take control of their cancer!

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

Help it grow.

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

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

1 person found this review helpful

This nonprofit organization is run by a wonderful person that is unbelievably committed to the her cause. Maryann Wahmann spends so much time focused upon increasing the awareness of Carcinoid Cancer and goes far beyond what one would expect for any patient that seek education. A truly worthy cause.

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?

2012

Was this review helpful?