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HeartlandNETS

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1 reviews

Review for Neuroendocrine Cancer Awareness Network Inc, Fort Mill, SC, USA

Rating: 5 stars  

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!

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.

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.

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

Role:  Client Served & I founded a regional support group for NET patients and attended several national conferences organized by CCAN.