International Neuroendocrine Cancer Alliance (INCA)
Patient Summit and European Neuroendocrine Tumor Society (ENETs) Meeting,
Barcelona 2018
This year the INCA summit, brought together 20 patient
organisations from 17 countries, held over two days leading into the European
Neuroendocrine Tumor Society (ENETs) meeting in Barcelona.
The program was action packed starting with the Annual
General Meeting of full members. Presented was the past President’s report by
Ron Hollander of NET Research Foundation, and myself the incoming President
until 2020. The Unmet needs whitepaper and survey conducted in the last year
will continue to be a focus as we strive for publication of the results, and
manage projects with our key international medical societies. We heard from the
members about their NET Cancer Day activities in 2017 and were amazed by the
incredible work done all over the globe to raise awareness about NETs not only
on November 10, but 365 days a year. What was achieved on November 10 was a
joint effort between patients, advocates, ambassadors, clinicians and the media
to make the awareness the best yet under the hashtag #letstalkaboutnets (8.4
million twitter impressions). Members talked about overcoming cultural,
geographic and language barriers to try and get the word out. Congratulations
to everyone on their hard work raising much needed awareness. This year we look
forward to utilising the infographic videos which will be translated into 7
languages for further reach of the key messages.
Following a busy first day, our second day started with the
continued expertise of Kathy Redmond in revising and working as an organisation
on our strategic plan. Members were asked to participate in a survey prior to
the summit and these results were discussed, what was clear is that INCA is a
respected and valued organisation by its members and as with all productive
organisations certain areas need improvement.
Our action plan for the next few year’s was agreed to and
will focus on the key areas of access to the best treatments and
diagnostics, patients involved in research and greater awareness of NET cancer
globally.
With the help of leading global medical leaders, including
current ENETs president Prof Dermot O’Toole and Dr Ben Lawrence of Auckland
Hospital New Zealand, INCA and its members were able to further develop ideas
around these key areas which we look forward to working on over the year to
come. We thank them for their continued support of the global patient
community.
Once again the INCA member summit was a fantastic
opportunity for the patient organisations to get together to share knowledge,
experience and put in place plans for the future invaluable work of INCA. We
look forward to reporting back on the work that is achieved in the months and
years to come.
Full photo's from ENETs and INCA meetings can be found here (on Flickr)
