Did You Know?
The Support Line provides guidance, resources, and referrals to NET patients or their loved ones. The collaboration allows both organizations to leverage each other’s complementary programs and expertise to help NET patients and caregivers around the world.
As one of the most recognized NET-related organizations in the US, CCF receives many inquiries for support from patients and caregivers every year. NCF, with its close ties to the patient and healthcare community, is poised to provide the best support possible.
The NCF Support Line provides support to those contacting CCF in addition to direct inquiries. The Support Line is a comprehensive addition to the current range of NET educational programs, advocacy tools, and support groups provided by NCF.
To receive support, patients or caregivers can fill out a questionnaire available at www.ncf.net/supportline. The answers help NCF direct the patient or caregiver to the most relevant informational resources, introduce them to others with a similar diagnosis or treatment plan, or NET experts specializing in their area of inquiry.
Luncheon with the Experts Continues
The new 2025 Luncheon with the Experts via Facebook LIVE continues on March 20th from 12:00pm til 1:00pm Eastern Time.
Dr. Delphine L. Chen, Professor of Radiology at University of Washington, Wil B. Nelp, MD Endowed Professorship in Nuclear Medicine is a board-certified physician in nuclear medicine, a type of imaging that uses small doses of radioactive materials to assess, diagnose and treat diseases. Her expertise spans several nuclear medicine-based diagnostic tests and procedures such as positron emission tomography (PET). At Fred Hutch, she also serves as the director of molecular imaging. This fast-growing field examines how the body is functioning at a molecular or cellular level. Molecular imaging, which has its roots in nuclear medicine, provides insight about how diseases like cancer behave, which in turn can affect treatment decisions.
In addition to providing care, she is also an active researcher. One area of interest is how PET scan tracers can be used to determine whether or not a cell is dying. The idea is that this information could help determine how a tumor is responding to therapy and therefore guide treatment. Dr. Chen led the first in-human trial of these tracers, which has served as the foundation for multiple clinical trials currently being conducted at three major U.S. medical centers. These clinical trials are focused on how we can best use this tracer to identify patients who may respond to anticancer drugs called PARP inhibitors. She and her colleagues plan to expand that research at Fred Hutch.
If you have any non-case-specific questions, you are welcome to pose them during the presentation and our guests will try to answer them LIVE! This Facebook Live event will be hosted by B. Rain Bennett a longtime CCF filmmaker and dear friend of the NET community. We hope you can join us! #LetsTalkAboutNETs
If you do not have Facebook, we will also be streaming LIVE on YouTube. Please visit our YouTube channel for past shows you may have missed or that you may want to watch again. To receive notifications of all new videos on our YouTube channel, CLICK LIKE, SUBSCRIBE and HIT THE BELL to receive notifications each time a new video is uploaded.
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LACNETS & NANETS COLLABORATION
RARE DISEASE DAY 2025
Raising awareness and generating change for the 300 million people worldwide living with a rare disease, their families and caregivers. Visit https://www.rarediseaseday.org/ to learn how you can participate.
Congratulations to Lisa Yen, Director of Programs and Outreach at LACNETS, who was recently featured in ShoutOutLA.
“Hi Lisa, let’s start by talking about what inspires you?
Helping others
Ever since I was a little kid, I wanted to make a difference in the world. At the age of 16, I felt called to be a nurse. I loved working as a cardiac ICU nurse for a couple years and helping people recover after suffering a heart attack or recovering from open heart surgery. I then spent 2 months in a hospital in rural Kenya when I witnessed the challenges of accessing even the most basic medical care. This prompted me to return to school to become a nurse practitioner. I absolutely loved being a NP hospitalist. I loved being able to make a meaningful impact on those who were critically ill. Unfortunately, my world was turned upside down when my husband was suddenly and unexpectedly diagnosed with advanced neuroendocrine tumor (NET or neuroendocrine cancer). While I continue to support him in our journey with this uncommon cancer, I am inspired to help others like him to ease their suffering and help them be able to thrive despite living with cancer.”
Alira Health Partners with CCF and LACNETS to Help NET Cancer Patients Take Control of Their Healthcare Journey
Partnership Empowers Patients with Mobile Platform Providing Critical Patient Support
Framingham, Mass., June 29, 2023 — Alira Health, a global advisory and clinical research firm whose mission is to humanize healthcare and life sciences, announced today the addition of the Learn Advocate Connect Neuroendocrine Tumor Society (LACNETS) to accompany its partnership with the Carcinoid Cancer Foundation (CCF) in supporting those living with NET.
CCF Turns 55!
A Rare Disease Day Story from a NET Patient!
Dr. Katie Dexter is a PCD and Lung Carcinoid patient. This is her story of navigating not one, but TWO, rare diseases. Watch interview by Rain Bennett a longtime CCF filmmaker and dear friend of the NET community. Watch here.
Neuroendocrine Tumor Information in 10 Languages
Did you know that the International Neuroendocrine Cancer Alliance (INCA), has free, NET info packets in 10 languages? Click here to select your language and download the factsheets: https://incalliance.org/net-info-packs/. The Carcinoid Cancer Foundation is proud to be a founding member of INCA.
CCF Infographic: 6 Questions to Ask Your Doctor
Have you or someone you love been diagnosed with a neuroendocrine tumor or carcinoid cancer? It can feel like a daunting task to figure out next steps and doctor appointments may be overwhelming. You can help yourself or support a loved-one by learning about the disease and preparing yourself for doctor visits. The first visit may be the most challenging, so It’s important to arm yourself with relevant questions. Here we provide you with six questions, specific to neuroendocrine tumors, to ask your doctor. Click here to download the infographic.
