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5th INCA NET Patient Advocacy Summit

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5th INCA NET Patient Advocacy Summit

 

For a fifth time since 2012 INCA brings together NET patient advocate leaders from around the globe to learn about the latest treatment developments and research, as well as share best practices and build common platforms. This year, for the first time INCA (International Neuroendocrine Cancer Alliance) and ENETs held a joint symposium between NET physicians and patient advocates from around the world, at the ENETS conference in Barcelona.

 

5th INCA NET Patient Advocacy Summit

Barcelona 8-10 March 2017

 

 

The patient focus – Next Steps Discussion

Representatives of the medical societies were invited to discuss unmet needs further. Ideas were exchanged on potential solutions to the hurdles preventing needs from being met. It was emphasised by participating NETs medical leaders that it is important to remember that healthcare professionals have unmet needs too. For example, support for better understanding of patient needs and expectations at the time of diagnosis. As such a two-way process with close collaboration is crucial.

This ‘Next Steps’ discussion took place on 11 March at the INCA Annual Summit meeting, as a follow up to a joint session on Unmet Needs held the previous day at ENETS 2017, attended by physicans and patient activists. Ron Hollander, President of INCA, is the discussion moderator.

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The expert panel includes, from left to right: George Fisher (NANETS), Dr. David Metz (NANETS), Eva Segalov (COMNETS) and Prof. Dermot O’Toole (ENETS).

 

Read more about the first joint symposium between NET physicians and patient advocates.

Break-out Sessions

– 3 groups of patient leaders focusing on:
How can we work together with the medical community.
– Make a powerful statement about standards of care that all patients should have access to?
– Reach the many patients and those caring for them we are not reaching now?
– Close the gap of information needs for patients?

 

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Unmet Needs in NET Care,
Next Steps Discussion 

Break-out Sessions
on Addressing Unmet Needs

 

Presentations of INCA activities in 2016.

Let’s Talk About NETs and INCA social media communication in 2016.
Simone Leyden, Unicorn Foundation Australia, INCA President-Elect on NET Cancer Day Campaign Let’s Talk About NETs. Tore Aasbu, CarciNor Norway, INCA Board Member on INCA social media communication.

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Simone Leyden, Unicorn Foundation Australia,
on NET Cancer Day Campaign Let’s Talk About NETs.

Tore Aasbu, CarciNor Norway, INCA Board Member
on INCA social media communication.

 

 

INCA Member’s Overview – Challenges and Access

INCA member organizations presenting challenges and access.
Presenters;  Ron Hollander, NET Research Foundation, USA. Katia Brozek, Netzwerk Neuroendokrine Tumoren, Germany. Bill Claxton, CNETS Singapore. Dr. Sugandha Dureja, CNETS India. Dr. Piero Ferolla, Guiseppina Romano, A.I.NET Italy. Dirk Van Genechten, VZW NET & MEN Kanker, Belgium. Siobhan Conroy, Unicorn Foundation New Zealand. Catherine Bouvier, NET Patient Foundation UK. Simone Leyden, Unicorn Foundation Australia. Yoshiyuki Majima, PanCan Japan. Grace Goldstein, Carcinoid Cancer Foundation, USA. Josh Mailman, NorCal CarciNET, USA. Jo Grey, AMEND UK. Christine Rodien, APTED France. Mark McDonnell, NET Patient Network Ireland.

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Challenges and Access
– Jackie Herman, CNETS Canada
Challenges and Access – Katia Brozek,
Netzwerk Neuroendokrine Tumoren, Germany.

Challenges and Access
– William Claxton, CNETS Singapore

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Challenges and Access
– Dr. Sugandha Dureja, CNETS India
Challenges and Access – Dr. Piero Ferolla,
Guiseppina Romano, A.I.NET Italy

Challenges and Access – Dirk Van Genechten,
VZW NET & MEN Kanker, Belgium,
INCA Board Member.

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Challenges and Access – Siobhan Conroy,
Unicorn Foundation New Zealand,
INCA Board Member
Challenges and Access – Catherine Bouvier,
NET Patient Foundation UK.

Challenges and Access – Simone Leyden,
Unicorn Foundation Australia,
INCA President-Elect.

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Challenges and Access – Yoshiyuki Majima,
PanCan Japan, INCA Board Member.
Challenges and Access – Grace Goldstein,
Carcinoid Cancer Foundation, USA

Overview of Challenges to Access in the USA 
– Josh Mailman, NorCal CarciNET, USA

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Challenges and Access
– Jo Grey, AMEND UK
Challenges and Access
– Christine Rodien, APTED France

Challenges and Access – Mark McDonnell,
NET Patient Network Ireland

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Challenges and Access – Ron Hollander 
NET Research Foundation, USA
Closing Session – Recap & Next Steps
Ron Hollander, INCA President

 

 

 

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ENETS, the European Neuroendocrine Tumor Society

ENETS, the European Neuroendocrine Tumor Society was founded in 2004 and the society members, currently numbering nearly 1,400, bring a variety of expertise from such fields as oncology, pathology, radiology, nuclear medicine, endocrinology, surgery and gastroenterology to ENETS. Neuroendocrine tumors (NETs) present numerous complex clinical problems. Due to their relatively rare occurrence, research and patient care guidelines since the 1990s have been lacking. As a result ENETS was founded. Learn more at www.enets

Read more about ENETS 2017, Barcelona. This year attended by more than 1200 physicians and a few dozen patient advocates.

The International Neuroendocrine Cancer Alliance’s (INCA) Blog

INCA photos from INCA ENETS Symposium 2017 at Flickr https://www.flickr.com/photos/147932663@N08/albums/72157682236759665

 

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