LACNETS participated in INCA’s 12th annual Global NET Patient Advocate Summit in Segovia, Spain with 24 other Patient Advocacy organizations from 20 Countries around the globe.
The goal was to collaborate on spreading awareness and education of neuroendocrine cancer (neuroendocrine tumor or NETs), improving access to optimal treatments and care, advancing research and advocacy initiatives.
LACNETS attends the 12th INCA Global NET Patient Advocate Summit in Segovia, Spain on September 9-10th, 2024
In August 2022, LACNETS joined the International Neuroendocrine Cancer Alliance (INCA) as its 32nd member. The International Neuroendocrine Cancer Alliance (INCA) is the global voice in support of patients with neuroendocrine cancer and genetic syndromes (GenNETs). INCA is an umbrella organization representing 37 patient advocacy and research groups from 29 countries around the world. LACNETS Founder Giovanna Imbesi was a past guest of INCA and dreamed of LACNETS joining INCA as a member organization to add to the global voice and reach.
For the third consecutive year LACNETS attended the INCA Summit. Together with ENETS and NANETS leadership, over 30 representatives of INCA member organizations gathered to share best practices and lessons learned. Through engaging discussions innovative ideas were formed. Attendees left inspired by the collective dedication and hopeful about the impact these concerted efforts may make on behalf of those living with neuroendocrine cancer.
LACNETS shared their NET VITALS tool as an example of how patients living with NET can connect with their healthcare providers to learn, share and communicate what is vital about their specific neuroendocrine cancer diagnosis.
INCA member organizations had the opportunity to share one project at the Summit to inspire collaboration and innovation in creating awareness, access, research and advocacy in regards to NET (or neuroendocrine neoplasm, NEN).
Lisa Yen presented on NET VITALS during the member showcase.
Lisa Yen, LACNETS and Danielle Ralic, NorCal CarciNET co-moderated a breakout discussion on Clinical trials: Improving patient knowledge and understanding of clinical trials.
NANETS President, Dr. Thorvardur Halfdanarson gave a thoughtful presentation on meaningful involvement of patients in neuroendocrine cancer research. Given the increasing number of new diagnoses, there are also increasing needs and opportunities to collaborate and bring patient perspectives to the forefront of medical care. Following the Summit, Dr. Halfdanarson shared his takeaway about the importance of global patient advocacy organizations working together toward their common goal of helping those living with neuroendocrine cancer.
For more about 12th INCA Global NET Patient Advocate Summit, read INCA’s blogpost: https://incalliance.org/inca-summit-2024/
TRANSCRIPT:
Lisa Yen 00:00
Hi! I'm Lisa Yen. I'm the LACNETS Director of Programs and Outreach, and also the INCA Treasurer. And I'm here with Dr. Thor Halfdanarson in the beautiful town of Segovia in Spain, where we just spent the last couple days in an International Neuroendocrine Tumor Cancer Alliance. So Dr. Halfdanarson, I'd love to hear from you what you're doing here and what you've learned?
Dr. Thor Halfdanarson 00:24
So yeah, I haven't really… [had] not worked with INCA in any capacity before. I've been aware of them for a long time. So, it's a wonderful international organization. So I was invited to come here and speak on behalf of NANETS on patient participation in clinical research. And it's been, I will say, an exceptionally educational meeting for me, because this is not something I do every day.
Lisa Yen 00:49
Yeah, it's wonderful to have you as NANETS president, representing and collaborating. So what has that collaboration looked like for you?
Dr. Thor Halfdanarson 00:57
So we, so… at NANETS, we collaborate in a variety of different forms. So we try to keep a close association with patient advocacy groups. And obviously this is very beneficial for the patient population, for the relatives and things of that nature. So I think it's just very important for the success of the mission of helping patients with neuroendocrine tumors to collaborate as closely as we can and on as many fronts as we can.
Lisa Yen 01:25
Yeah, collaboration. We like to hear that. What might it translate to, Dr. Halfdanarson?
Dr. Thor Halfdanarson 01:34
I think making connections, talking to people, literally from all around the world. Obviously, we're all fighting the same enemy, the neuroendocrine neoplasms. But just hearing different perspectives, how different countries are dealing with this and things of that nature. So more connections are always good.
Lisa Yen 01:54
Wow, and especially globally.
Dr. Thor Halfdanarson 01:56
Globally, it's absolutely crucial, like I said, this is neuroendocrine tumors, or neuroendocrine tumor neoplasms, affect all of the world's population, and everywhere, the incidence is rising. We've seen that in Asia and Europe and the US. So we're all fighting the same problem.
Lisa Yen 02:13
Wow, and together, hopefully we're stronger. So what's your main takeaway from this conference?
Dr. Thor Halfdanarson 02:19
So the main takeaway from this conference is that I’m full of hope that there is an incredibly strong association of patients and advocacy groups all around the world. I think we just need to connect and try to work together more for a common goal.
Lisa Yen 02:42
Thank you for your collaboration. Thank you for your work to give us hope, and we look forward to seeing what that looks like in the future.
Dr. Thor Halfdanarson 02:52
It's been a pleasure. Thank you.
Lisa Yen 02:53
Thank you.
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