Healing NET Summit 2017—Unmet Needs of the NET Patient Community

The second Healing NET International Summit brought 40 physicians and scientists, 12 nurses/nurse practitioners, 7 patient advocates, and various sponsors and exhibitors from the medical, pharmaceutical, and nonprofit community together in Beaver Creek, Colorado, on February 21-23. (Click for Dr. Liu's Summit video and photo gallery)

The topic was Unmet Needs, which is an all too common topic when you are discussing a rare disease many physicians don’t understand; much less the patients seeking or receiving a diagnosis. When all of the participants were asked in advance to identify what they perceived as “unmet needs”, the list was a long one. Below are the categories identified by the group.

General sessions with all participants focused on candid discussion about which unmet needs were the top priority and what solutions might make a difference. Breakout sessions with the physicians ranged from discussing treatment pathways in real patient cases to debating the timing and dosimetry of PRRT. The nurse track focused on practical applications in the clinic to help hear and understand the patient’s real-life experience with carcinoid syndrome, and the patient advocacy representatives focused on ways they might work together to provide the best possible support to patients and caregivers.

A walk-through exhibit allowed attendees to HEAR patient voices describe their carcinoid syndrome experience in their own words and one dinner program was devoted to the clinical trial results of telotristat ethyl (now Xermelo  for carcinoid syndrome approved by FDA just days after the Summit ended).  A UCLA team presented the real-life experience of their PRRT clinical trial program with perspectives from the patient (Skyped in) and from the physicians, nurses, and even the nuclear safety engineer.

We look forward to providing more details of the Summit, and progress on distribution of results to the medical community. We thank our Summit supporters: Advanced Accelerator Applications, Lexicon, Novartis, Ethicon, Halyard, Neuroendocrine Cancer Awareness Network, Angiodynamics, Biotheranostics, and supported in part by an educational grant from Ipsen.