Learning to Speak Up with Cancer

June 9, 2017

Do you have concerns about speaking with your doctor? Wonder how to convey what you are feeling physically and emotionally? Josh Mailman’s newly published article in CURE, “What stands in the way of patient-physician communications and how can we get…


NET Specialist David C. Metz, MD Receives Prestigious AGA Recognition Award

May 14, 2017

Congratulations to Dr. David C. Metz, Co-Director of the Neuroendocrine Tumor Center at Penn Medicine, who has received the American Gastroenterological Association (AGA) Distinguished Clinician Award, Clinical Academic Practice. The AGA cited…


Neuroendocrine Tumors on TV: Rare Disease Day Special, February 28, 2017

February 28, 2017

NETs on TV!  The Carcinoid Cancer Foundation teamed up with The Balancing Act and Advanced Accelerator Applications to raise awareness about carcinoid and neuroendocrine tumors (NETs) during a feature on Lifetime TV on February 28 (Rare Disease Day)


Breaking News on Rare Disease Day — FDA Approves New Drug for Carcinoid Syndrome Diarrhea

February 28, 2017

On February 28, 2017, the US Food and Drug Administration (FDA) approved XERMELO™ (telotristat ethyl) 250 mg as a first and only orally administered therapy for the treatment of carcinoid syndrome diarrhea in combination with somatostatin analog (SSA)…


Interested in Carcinoid/Neuroendocrine Tumor Research?

February 4, 2017

The Carcinoid Cancer Foundation and our partner Self Care Catalysts are currently recruiting patients with carcinoid and other neuroendocrine tumors (NETs) for a research study which involves the use of the Carcinoid NETs Health Storylines mobile…


Advocating for the Neuroendocrine Tumor Community

February 1, 2017

Congratulations and with appreciation to Stacie Chevrier who has been appointed a Patient Representative with the U.S. Food and Drug Administration (FDA) to represent the Neuroendocrine Tumor community.  Stacie writes that she will “be involved …


New England Journal of Medicine Publishes Article on PRRT Clinical Study for Neuroendocrine Tumors

January 13, 2017

One of the most prestigious medical journals in the United States, the New England Journal of Medicine, published an article (January 12, 2017 issue) about the results of the NETTER-1 Phase 3 clinical trial results evaluating the efficacy and safety …


NETSPOT Gallium-68 Code for Medicare/Medicaid and Private Payors

January 10, 2017

Another exciting step forward for the NET community! Advanced Accelerator Applications announced  that the Centers for Medicare & Medicaid Services (CMS) has granted NETSPOT® Transitional Pass-Through Status under an “A-code” (A9587) for …


Speaking Up: What Stands in the Way of Patient-Physician Conversation about Neuroendocrine Tumors and Carcinoid Syndrome

January 2, 2017

Members of the neuroendocrine tumor (NET) community are invited to attend an informal discussion, hosted by Lexicon Pharmaceuticals, about the barriers and opportunities in discussing NETs and carcinoid syndrome with your healthcare professional…


Recent Progress in Neuroendocrine Tumor Management

December 21, 2016

Has there been significant recent progress in the management of Neuroendocrine Tumors? NET specialist Jonathan R. Strosberg, MD of the H. Lee Moffitt Cancer Center in Tampa, Florida, says “unequivocally yes.” OncLive interviews Dr. …