The NETRF is 100% dedicated and focused on funding research and discovering cures and improved treatments for all Neuroendocrine Tumor Cancers and all patients living with NETs. As a 7+ year thriver/survivor of functional Insulinoma, a pancreatic Neuroendocrine Tumor (pNET), I believe 100% this goal and mission of life and survivorship shall soon be achieved. I am grateful and in awe of NETRF. Their singular, important goal and work is championed and supported by outstanding leadership, staff and a stellar, multitalented Board of Directors who are personally and generously invested and energized in discovering cures for NETs. NETRF has gifted $20 million in research grants to brilliant researchers internationally, including Dr. Carl June and his Car T cell Immunotherapy. The NETRF website is an excellent resource for all in the NET Community seeking knowledge of patient support groups, doctor database, general NET information, blogs, general support and up to the minute medical and FDA breakthroughs for NETs. The Patient/Caregiver Educational Conferences supported annually by NETRF are a highlight of what this Foundation offers the NET Community- awareness, visibility, help, hope, education, support, networking and community. Each year I know we are closer to achieving the mission of cures and improved treatments for all NETs.
NETRF has had a profound positive impact on my health, healing and life since my first attendance at a NETRF sponsored NET Patient/Caregiver Educational Conference at PENN Medicine in Philadelphia, Spring 2014. I believe it was their 3rd Annual Conference in Philadelphia. It was also my 3rd year anniversary of being diagnosed with a very rare, (one in ten million!) pancreatic Neuroendocrine Tumor (pNET), namely functional Insulinoma. I only knew of two others in the world who had dealt with this devastating diagnosis. Steve Jobs who died from a non-functional Insulinoma in 2011. And another patient/friend I had the honor to know via emails & phone calls. Never meeting in person or even seeing a photo of each other, we were a support group of two. Sadly & shockingly & suddenly he died from a functional Insulinoma in 2013. Illness, besides being terrifying is also lonely and isolating. At my first NETRF Conference I met many, many patients, families, caregivers, doctors, researchers, and a host of medical professionals dedicating time and energy on behalf of improving the lives and health and survival of NET patients. Seems we all had the same important goal and focus. It was and is a very supportive environment. How good to know a whole foundation has your back & you're not alone. I've now personally attended seven NETRF Conferences, both east and west coast and live-streamed several more. Wow - time really flies! always learn something new, am encouraged and inspired by what's in the pipeline and all the dynamic patients and doctors I have the good fortune to connect with. My important, life-supportive therapy decisions have been made based on new information I learned from NETRF. And I have made real friendships through the NETRF network. It is truly a blessing. I've had the opportunity and honor of being invited twice to speak on the Patient panel. I pray to also be an inspiring and empowering influence for all dealing with this life challenge; to give help, hope, clarity and courage. Thank you NETRF and donors. You are truly a 5 Star Great Foundation.
The NETRF serves as extremely critical need for the specialized NET community. The expertise, support, and outreach provides a miriad of avenues to promote and disseminate key information for the health and wellness of NET patients, care partners, and health providers. This is an amazing and deeply appreciated organization.
The Neuroendocrine Tumor Research Foundation, Inc. puts on free, excellent patient education meetings! I learned about a new procedure, met the expert surgeon doing it, and had the surgery! My QOL and my time here were greatly improved by this knowledge gained at their conference. I have also attended another conference which has given me much information that I have been able to discuss with my oncologist.
Their staff is friendly, helpful and committed. Their funding of research is so basic to future treatments. Truly THE organization for this often ignored, often unknown cancer!
One of the most progressive and forward thinking non-profit organsations in the field of Neuroendocrine Tumours
I was diagnosed with pancreatic neuroendocrine cancer 9 months ago. I soon discovered that this rare form of cancer is not the subject of a long history of scientific research, but the Caring for Carcinoid Foundation is changing that. Currently CCF is funding research on immunotherapy for neuroendocrine cancers and trials will begin next summer. Their website is a source of excellent information about this disease and a link to a world of physicians and advocates who care deeply about those of us with this kind of cancer.
The CFCF assists patients like myself with trustworthy and current information about the basics of neuroendocrine, particularly carcinoid, tumors; current developments in monitoring and treating the disease; and in connecting me with others who also live with this chronic disease. Additionally, I feel confident that the funds that are contributed to CFCF go to solid, meaningful research into treating this disease, with the goal of finding a cure for this disease. With that in mind, I have helped raise awareness of carcinoid cancer and funds for CFCF sponsored research.
If you have carcinoid or have a family member with carcinoid, this organization is for you. They are very caring and very dedicated to help you with your disease. They are constantly gathering information to help you make informed decisions. They will connect you with others to form a personalised support system for you. All money donated goes for research and that is important for all of us.