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INCA Monthly Newsletter - December 2019 News Update
INCA Members' News
Medical News

NET Patient Advocates Around the Globe Highlight the NET Community Achievements in 2019

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.

Upcoming in 2020: INCA/ENETS Symposium

INCA is pleased to announce that the INCA/ENETS Symposium will be held on March 13th, 2020 as part of the 17th Annual ENETS Conference for the Diagnosis and Treatment of Neuroendocrine Tumor Disease in Barcelona. INCA patient leaders will share best practices of patient-driven research and discuss research and access issues.

Two major areas of key importance to the NET patient community will be the primary focus of the Symposium – the value of patient-focused research, and access challenges that NET patients face today. A moderated panel discussion will elaborate on the challenges around access and affordability in respect to diagnosis, treatment and care for NET patients, and the value of patient-focused research along with ways to prioritize earlier diagnosis on the agenda.

All ENETS 2020 Conference participants are more than welcome to attend the INCA/ENETS Symposium on Friday, March 13th, at 8:30 am.

More information about the preliminary agenda of the Symposium can be found here

INCA Members' News

NET Patients Getting Together in Argentina

ACIAPO’s campaign #buscamos1000NET - “Nunca es Tarde” (NET), meaning that it is never too late, has been quite successful and reached 20 hospitals from Buenos Aires, Santa Fe, Cordoba, Tucumán and Mendoza in 2019. More than 65 NET patients were identified throughout this journey and 40 healthcare professionals from the fields of oncology and endocrinology joined the information campaign. In 2020 the growth of NET networking will be even more impressive with more cooperation with health institutions throughout Argentina. The mission of identifying patients with NETs will be further energized by more awareness and screening campaigns. To attract more public attention, ACIAPO’s milestone event for 2020 will be a fundraising race, which will potentially become an annual event.

2020 Call for Applications to AMEND’s Research Award Fund

The Board of Trustees of AMEND have allocated £30,000 for the 2020 round of Research Awards. The awards aim to supplement an existing project or pump-prime new research ideas. Applicants must be registered members of AMEND (membership is free) and the successful projects must be specifically directed to the study of neuroendocrine and endocrine tumors, within the context of the Charity’s remit.  
Awards are currently only available to projects carried out within the United Kingdom and Eire.  Grants are usually to the value of £10,000 each, although larger amounts have been awarded.  Current awards include the following:
•    The Nick Fayers Award for MEN1 Research forms part of the annual grants program.  It was set up in memory of the late Nick Fayers who had MEN1
•  ACC Support UK Awards may be granted for projects related to adrenocortical cancer
•   AMEND General Research Award. Grants for any of the diseases and tumors under the AMEND umbrella (MEN1, MEN2A, MEN2B, ACC, MTC, SDHx and pheochromocytoma).

For more information and to apply, visit the AMEND website.

The deadline for submissions of applications is April 30th, 2020.

AZNETS Networking

In the last 6 months of 2019 AZNETS forged partnerships with cancer groups and foundations in order to strengthen its capacity and raise awareness on neuroendocrine cancer in Africa. The African NET patient group was supported by Faraja Cancer Support Trust, a leading cancer awareness and patient care organization, based in Nairobi, Kenya, who provided assistance to NET patients for treatment and psychological care on World NET Cancer Day. 

AZNETS applied to join Kenyan Network of Cancer Organizations (KENCO), the national umbrella body for cancer NGOs, patient groups and community-based organizations active in cancer control. KENCO membership will benefit AZNETS in capacity building, access to governmental support, resources and widened advocacy reach.

A partnership with Safaricom Foundation was also launched. Through the foundation’s Usamaria Project, providing financial assistance for care and treatments to patients in need, AZNETS was able to refer two NET patients in deep financial need to apply for funding. Positive feedback from the foundation was received along with a promise to fund the patients shortly.

 2019 NET Research Grant Across Canada – Call for Applications

CNETS Canada is committed to improving the quality of life and survival for NET patients across Canada. To deliver on this vision, CNETS Canada has been supporting NET research since 2011, initially through a partnership-based approach and since 2016 through its independent Research Funding Framework.
This is the fourth year in which CNETS Canada are offering research grants across Canada for NET research based on their framework.
CNETS Canada is pleased to announce the 2019 Neuroendocrine Tumor Research Grant competition to provide grant-in-aid for three projects up to a maximum of $40,000 per project.
One of these three grants-in-aid will be funded through the “The Daniels Constellation Fund for Neuroendocrine Cancer Research“ thanks to the tremendous fundraising efforts of Bailey and Jonathan Daniels.

Check the 2019 NET research grant eligibility criteria here

Final Application Submission Deadline: January 15th, 2020

NET Italy Onlus Hosted a Meeting on Palliative Care in Italy

A meeting on patients’ rights and their access to palliative care was organized by NET Italy Onlus on December 4th in Mirandola. More than 120 patients attended to learn about the national regulations on access to care provided at home. Personal experiences and stories were shared by family members and nurses supporting patients in need of palliative care. At the end of the event, the take-home message resonated clearly: every patient deserves dignity and help in each phase of the disease.

A Decade of NET Research Progress

More than 100 neuroendocrine tumor researchers and clinicians from 25 U.S. states and eight countries came together to share progress at the Neuroendocrine Tumor Research Foundation (NETRF) Annual Research Symposium on May 2-3, 2019 in Boston, MA, USA.
Physicians and scientists said some of the earliest objectives of NETRF were coming to fruition.

“Remarkable progress has been made in the last ten-plus years. It is truly extraordinary. It has gone from a question of whether it can be done to seeing it and being amazed at how well it can be done,” said Matthew Meyerson, MD, Dana-Farber Cancer Institute.
NETRF’s Board of Scientific Advisors, Evan Vosburgh, MD, said we are at a tipping point, moving from follower to leader, “I think we will now be informing other tumor types. It’s almost flipped.”

Presenters at the conference shared unpublished research in many areas. Presentations on laboratory models, immuno-oncology, and nuclear medicine sparked the most discussion.

For additional information, click here.

Pheo Para Genetics Webinar on January 27th 2020

The Pheo Para Alliance Live Webinar Series will kick off 2020 with Lauren Fishbein, MD, PhD, MTR in a live discussion on the genetic mutations associated with pheo para. Dr. Fishbein is the Assistant Professor of Medicine at the University of Colorado School of Medicine in the Division of Endocrinology, Metabolism and Diabetes with a secondary appointment in the Division of Biomedical Informatics and Personalized Medicine. Her research and clinical interests are in neuroendocrine tumor genetics with a special focus on pheochromocytomas and paragangliomas.
Patients and their families will also have an opportunity to ask questions. You can submit your questions beforehand or ask questions live.

Click here to register for the webinar 

NET Education Day Talks by Unicorn Foundation New Zealand Available Online

The Unicorn Foundation New Zealand recently published videos of some of the NET specialist talks delivered on NET Education Day in New Zealand on their YouTube channel. The topics covered are as follows:

•  Imaging in Neuroendocrine Tumors: Dr Jane Reeve Auckland DHB)
•  What is PRRT: Dr Jenny Davidson (Auckland DHB)
•  Treatment of NETs: Dr Dean Harris (Canterbury DHB)
• Endocrine Testing and Treatment: Dr Veronica Boyle (Counties Manukau DHB)

Click any of the titles above to watch the videos. The Unicorn Foundation NZ would like to thank again all NET specialist speakers who voluntarily gave their time to speak at this year's Education Day.

Medical News

Neuroendocrine Neoplasia Revisited: A Rare Tumor Goes Molecular

Recent publication in the ASCO Daily News features the medical history and the most recent developments in the field of neuroendocrine neoplasia diagnostics and therapies. In addition to an overview of the rationale behind the World Health Organization common nomenclature for NEN, the article highlights new developments and discusses them in the context of available data and ongoing trials’ results.

You can read the full article here.

Why Is It Important to Participate in Clinical Trials?

In a podcast from, Dr. Ryan Nipp, MD, MPH, and Dr. Electra Paskett, PhD, MSPH, discuss their article “Overcoming barriers for participation in Clinical trial enrollment” from the 2019 ASCO educational blog. They share why it is important for people with cancer to participate in clinical trials and some of the reasons people may not be able to participate. They also discuss finding financial resources, the informed consent process and the role of patient navigators.

Dr. Ryan Nipp is a gastrointestinal oncologist and health services researcher at Massachusetts General Hospital Cancer Center. Dr. Electra Paskett is the Marion N. Rowley Professor of Cancer Research at The Ohio State University (OSU). She is the director of the Division of Cancer Prevention and Control in the College of Medicine, a professor in the Division of Epidemiology in the College of Public Health, and the associate director of Population Sciences and program leader of the Cancer Control Program in the Comprehensive Cancer Center of OSU. She is also the director of the Center for Cancer Health Equity at the James Cancer Hospital.

You can listen to the podcast here.

A Major Step Forward in Testing for NETs Is on Its Way to Commercialization

Dr. Eugene Woltering, The James D. Rives Professor of Surgery and Neuroscience Section Chief of Surgical Endocrinology, and his team created a non-invasive screening test for neuroendocrine tumors (NETs) of the gut by using stool samples. Biz New Orleans shared the news in an article dedicated to innovative technologies advancing diagnostics for cancer and surgical repair techniques, among which is NETDetect™. This screening kit offers the ability to detect these types of tumors early, and possibly pre-cancerous NETs as well.

Read the full article here.

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