2019 was indeed a big year for INCA, with the publication of the Unmet Needs in NETs article as an open-access publication in the International Journal of Cancer, the ENETS First Award for Poster in the Clinical Category, the 6 new INCA members that joined our family, and the launch of SCAN – a survey on access challenges that achieved the biggest number of respondents so far – over 2300 NET patients and carers, and over 430 healthcare professionals.
„We started to work for improved access to appropriate treatments and diagnostics on a global scale, to educate healthcare professionals, to raise awareness about NETs in the medical community and within the general public, and to inspire and promote meaningful NET research, in addition to strongly encouraging patient involvement in research.“, Simone Leyden, INCA President and Unicorn Foundation Co-Founder and CEO says.
The growth of the NET advocacy community is our greatest achievement in 2019 according to the majority of INCA members around the globe. This growth has many aspects from improved awareness about the disease, to better recognition of patient needs and more clinical trials for NETs.
Our community has become bigger and stronger. In 2019 INCA welcomed several new member organizations and now represents 26 NET patient groups from 6 continents. This is a huge step towards uniting the patient voices from Africa, Asia, Australia, the Americas and Europe. With more people on board, we earned the opportunity to exchange ideas, best practices and values among 6 continents.
The NET community gained more recognition by the general public and the healthcare professionals alike. Just a few of the many examples:
For the first time, a NET awareness campaign was released in Argentina and became the biggest achievement in 2019 for ACIAPO. More healthcare professionals recognized neuroendocrine tumors, according to Christine Rodien-Louw, President of APTED, France.
“The NET patient voice is being heard and listened to by the medical professionals with much greater impact”, says Mark McDonnell, INCA Treasurer and NET Patient Network CEO.
Another big achievement of our community, highlighted by Grace Goldstein, Carcinoid Cancer Foundation’s Chief Operating Officer and Past INCA President, was the 10th anniversary of NET Cancer Day in 2019.
Equitable access to new therapeutic options made possible – huge progress in Canada, USA and Italy.
For Dirk Van Genechten, Vice President of the Belgian NET & MEN Association, the greatest INCA achievement in 2019 is that: “We won the first prize for our poster at ENETS – not only a token of respect, but also putting INCA and the importance of the patient voice in the spotlight!”
The many aspects of our growth as a community are well summarized by Catherine Bouvier, INCA President-Elect and NET Patient Foundation CEO:
“The best achievement in NETs is the growth of an advocacy community with a shared collaborative vision to raise awareness of neuroendocrine cancers and genetic neuroendocrine tumors, raise the profile of the vital patient voice and highlight the unmet needs of those affected by this complex condition.”
“I am more than proud with what INCA has achieved thanks to the dedication and focus of its members and leaders. 2020 is building up to be another milestone year for INCA, and we are looking forward to a whole new string of reasons to be proud for making the NET patient voice matter.”, concludes INCA Executive Director Teodora Kolarova.