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69 Reviews
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July 13, 2012
1 person found this review helpful

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July 13, 2012
1 person found this review helpful

Up until 3 years ago, I had never heard of Carcinoid Cancer...I have since had the pleasure of becoming close friends of the Wahmann Family, and have had the priveledge of being part of the CCAN experience....Watching Maryann and Bob spend time with Patients, families and doctors, Making people aware of not only the Disease itself, but the treatments available, who to call, what drugs to try has been such a rewarding experience for me to watch from an outside position The World needs to know about this disease, and CCAN is the organization to get it done!

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2012

June 23, 2011
1 person found this review helpful

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June 23, 2011
1 person found this review helpful

After being diagnosed a year ago with carcinoid cancer I felt helpless and alone. I spent countless hours researching my disease. During this frantic time I decided a support group would probably serve me well and I went to a meeting in N. Bellmore and met Maryann Wahman. I found the meeting very informative and open to questions from its members. I knew it was where I was supposed to be while on my journey. Maryann is always there when you need her and certainly a fantastic "support" team leader. I thank her from the bottom of my heart.

The Great!

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

helping me find the right doctors by going to see Drs. Warner and Zacks. I also receive timely emails and mailings regarding conferences and symposiums.

Ways to make it better...

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

Not knowing how other support groups are run, I don't see how they can do anything more than they do. They work very hard at getting information to their members, are very supportive and offer numerous tools for their members to use.

June 22, 2011
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June 22, 2011
1 person found this review helpful

CCAN was there when all the other Carcinoid foundations did not answer the phone on a holiday. Maryann and her husband were a godsend. They spent a hour on the phone with me on Christmas day 2008. I was having a rough day dealing with my recent DX. But they talked to me and calm me down, They told me to call anytime and they would help me with my journey,
I will continue to suport them anyway I can.

The Great!

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

They were just so supportive. It nice to talk to a patient and not just someone in an office reading a script. They truy understand what the patient and caregiver is going through. They sent a amzing information packet to my home.

Ways to make it better...

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

none

June 21, 2011

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June 21, 2011

CCAN provides the most current education about the diagnosis and treatment of carcinoid/NET cancers for both physicians and patients, consistently providing top notch physicians and educators. They also provide unparalleled support to patient support groups and brought a conference to our region at the request of our local support group.
CCAN is among the top patient advocacy groups in the nation.
I've benefited from them as a patient from attending their conferences and from watching their conferences and webinars on line. They have also provided support to our local patient group. I can't say enough about the good they do in the carcinoid/NET community.

The Great!

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

attending conferences, watching conferences and webinars on line, and in seeing their support to local patient groups.

Ways to make it better...

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

Increase their funding so they can help more people.

June 21, 2011
1 person found this review helpful

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June 21, 2011
1 person found this review helpful

CCAN is one the the most up to date and extensive soureces of information on neuroendocrine tumors in the USA . These individuals serve as a day to day source of comfort, information and physician referrals for individuals with these rare tumors. In additioin CCAN is the sponsor or co-sponsor of regional and national conferences that are geared to educate those individuals with these rare tumors

The Great!

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

I have lectured for these folks on many occasiona and they have helped me put on the National Patient NET conferences

Ways to make it better...

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

clone them so tha tthey could do more great work

June 4, 2011
1 person found this review helpful

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June 4, 2011
1 person found this review helpful

Wonderful organization. Very informative and helpful information. Being such a rare disease, we need all the help we can get as patients. I read each and every word they print. My hats off to them.

The Great!

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

Have received info at home that I could share with others.

Ways to make it better...

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

I would like to see listings of all the medical professionals that specialize in NETS.

June 3, 2011
1 person found this review helpful

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June 3, 2011
1 person found this review helpful

I learned about CCAN after having surgery for a pulmonary carcinoid and have found them to be of enormous help in understanding the nature of my disease.

- Upon my first contact, I was greeted warmly and had many questions answered, including contacts of people willing to speak to me
about their experience with this rare disease. I also received a large package with all types of information.

-Meetings are well focused and very informative.

-CCAN hosts a variety of conferences and other events that bring the top physicians in the field to educate patients and support people on the latest developments and answer questions.

- The management team at CCAN is very dynamic and is a major force in raising awareness about this rare disease at all levels.

The Great!

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

I have learned how to manage my disease by developing a working knowledge of how carcinoid is different from other cancers and how and why it is so often improperly treated by physicians who may not be aware of these differences and how to treat them.

Ways to make it better...

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

I have no specific suggestions, as they have far exceeded my expectations. I personally plan volunteer to help out more in upcoming events.

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

How did you find this group?

Through the internet.

What, if any, change in your life has this group encouraged?

This group has taught me to learn as much as possible about my disease and to be my own advocate.

When was your last experience with this nonprofit?

2011

June 2, 2011
1 person found this review helpful

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June 2, 2011
1 person found this review helpful

Truly, I cannot say enough about the generosity, kindness, and helpfulness of this organization. When I was first diagnosed with this rare cancer, I called and spoke to Maryann Wahman for over an hour. She was, and has remained, an advocate for Carcinoid patients, while being a patient herself. She and her husband and family run the entire organization, and take calls, plan events, run a support group, and keep up to date on the latest information. They always have time to help somehow. They help with referrals to carcinoid specialists, have information on procedures and medications, and can get people in touch with each other to help. I cannot thank them enough.

The Great!

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

the support groups they run, in finding the best care available, in networking with other carcinoid patients, in attending seminars where carcinoid specialists speak and give information, helping to raise money for carcinoid cancer research.

Ways to make it better...

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

I think they are perfect.

June 2, 2011
1 person found this review helpful

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June 2, 2011
1 person found this review helpful

Carcinoid Cancer Awareness Network is an invaluable resource for folks dealing with carcinoid or neuroendocrine cancers. They have provided one on one assistance to survivors and caregivers and in addition have supported other support groups during their start-up by providing great information and advice. Their role in in organizing and posting videos of conferences held across the country has allowed patients and their families access to information they might never have gotten otherwise. As carcinoid and neuroendocrine tumors are rare cancers, survivors and caregivers can feel very isolated. It is fantastic to get connected with other survivors and caregivers, support groups and most importantly those medical experts in the field that can get the survivors on track with a management plan that can lead to a high quality, productive life for folks with this disease. CCAN also serves as the patient liason to the NANETS (North American Neuroendocrine Tumor Society) and has been one of the founding partners in the recently organized world wide NET awareness group that has instituted and promoted Worldwide NET Cancer Awareness Day. Hopefully, the awareness that is the mission of this organization will lead to more doctors looking for NETs in their patients, more research dollars for a cure for NETs and more young doctors choosing a specialty in this field to give NET patients in the furture a brighter tomorrow. The service CCAN provides is invaluable to the NET community! Kudos for all you do!

The Great!

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

I have received referrals to our support group from CCAN, which resulted in survivors and caregivers getting support and information in their area of the country. I have attended conferences organized by CCAN and have been amazed at the quality of the conferences. Top medical speakers, great accomodations, and excellent food, combined with opportunities to meet with other survivors, caregivers and support group leaders.

Ways to make it better...

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

I would clone them into more of the same...This organization is run by one family...parents and children...and they carry an immense burden of responsibility in the NET community. Our worst nightmare would be if they were not there to perform all the services they provide.

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

How did you find this group?

Through attending a conference organized by them.

What, if any, change in your life has this group encouraged?

I became a support group founder/leader to improve knowledge, awareness and support for carcinoid and neuroendocrine cancer survivors and caregivers. From a small group of five in July of 2008, we now have members across the USA, which only emphasized in my mind how very committed CCAN and its founders are to our NET community. I sincerely don't know how they do all that they do!

When was your last experience with this nonprofit?

2010

June 1, 2011
1 person found this review helpful

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June 1, 2011
1 person found this review helpful

I know one of the founders of this organization from high school. Much to my surprise the husband of a colleague at work has this specific (and rare) cancer. There are no coincidences. That CCAN came into my life so that I could pass on the information to my colleague has meant so much

CCAN , was able to give this family the information they needed to make difficult decisions about their future.

I have participated in the Walk and the Gala this past year. Bob and Maryann are so warm, knowledgeable and supportive. The outreach they do with the public, corporations and hospitals is invaluable.

The Great!

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

In passing on information to a colleague whose husband has this cancer.

Ways to make it better...

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

Fund them with more money so they could do more outreach and expand.

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