February 1, 2021
By Anne Dabbs,
NCAN TN Chapter Leader, NET Patient
Navigating Neuroendocrine Cancer is no small undertaking. As the saying goes, it takes a village – and rightfully so.
A NET cancer diagnosis is a huge, ongoing challenge. Many patients and experts suggest that living with a rare disease diagnosis requires as much time and attention as a full time job. It is essential for NETs patients to have a network and an understanding community to support them (and their families) when they need it most. That’s where NCAN comes in.
The Net Cancer Awareness Network helps to guide, support, and encourage NET patients and their families along their healthcare journeys.
Those initial emotions of shock and/or relief upon receiving a Neuroendocrine Cancer diagnosis are often quickly joined by feelings of isolation, confusion, and helplessness. The bewilderment does not go away quickly. Finding others who understand your disease; who live with your disease; who have hope for the future of your disease, can be the missing link to maintaining a healthy mindset and lifestyle. Public and even broad medical awareness of Nets Cancer is an ever evolving process, and can be overly challenging to attempt on your own.
There are Five basic ways NCAN can support you:
1) The NCAN Hotline: A 7 day a week, 9am-9pm hotline is answered by a Net Cancer patient or caregiver offering a listening ear, encouragement and resource information, 365 days a year. 1-866-850-9555
2) Website Resources: Netcancerawareness.org offers an overview of Neuroendocrine Cancer with resource links to major Research and Advocacy Groups for people with NETs. Also included is a Glossary to help make sense of the new terminology. A Calendar of educational and social opportunities is updated regularly. Previous Event Videos are stored here for easy retrieval. For inspirational or emotional support, Podcasts and a monthly Blog are found in the Resource Room. A Zebra Store even offers themed products to help raise awareness. If it’s information you want, this is where you can find it.
3) Conferences and Events: NCAN is well recognized for it’s regional and national conferences which bring Neuroendocrine Cancer patients, families, advocates and Nets specialist together for learning opportunities. Social events combined with fund raising efforts are also a part of our community. All Upcoming Events are listed on the website with links to easy registration. NCAN also participates in national medical trade shows and educational meetings; once again raising awareness for NETs.
4) Information Packets: are available and FREE for all Neuroendocrine patients who request them via the Website. These mailings offer a basic introduction to Neuroendocrine Cancer and some of the treatment options available.
5) Chapter Support Groups: The outreach efforts of NCAN have expanded to include over 33 Regional Chapter Support Groups for patients and their families. These groups meet multiple times a year and offer the opportunity to connect with, and learn from others who are living with Neuroendocrine Cancer.More information about these support groups and how to join is is available on the NCAN Website.
The awareness of Neuroendocrine Cancer is growing at a record pace due to increased diagnostic tools and a better informed public. The NCAN Community, our village, is always here for you if you need a little extra support. Don’t hesitate to reach out by phone or e-mail.
And remember, an essential part of our village is YOU. We need you to help us do what we do. So connect with one of our FaceBook Support Groups, join a local Chapter Support Group, and attend an NCAN event.
Someone is waiting to be inspired by your journey. Someone is wanting to become your friend. Someone is willing to make a connection that surpasses our common diagnosis, and offer support during challenging times. That someone can be you.
Find out more about how YOU can help the NET Community.
Disclaimer: NCAN blog posts are the opinions of its writers and are not intended as a replacement for medical advice. Please consult your Health Care Providers for individual concerns.
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Alysia Christensen says
February 20, 2021 at 4:21 pmAnne, a full time job is right! Thanks for sharing all the resources. We need them all. And I appreciate your sincerity because it helps me realize that what you are directing us to will provide quality support. Thanks!!!
Anne Dabbs says
March 13, 2021 at 5:13 pmThank you Alysia. I appreciate your comments and your support. You, too, know the value of a good support team!
Tom Wilson says
February 19, 2021 at 12:23 amNice post Anne. You summed up NCAN well.
Anne Dabbs says
March 13, 2021 at 5:15 pmTom!,,Thank you! I appreciate your comments and look forward to continue working with you on NCAN’s behalf. I love sour village!
Nancy Kerr says
February 18, 2021 at 4:10 pmExcellent article offering great information
Anne Dabbs says
March 13, 2021 at 5:17 pmNancy, thank you for your kind words and dedication to helping as many others as we can learn how to live well with this crazy disease.
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