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INCA Monthly Newsletter - January 2020 News Update
INCA Members' News
Medical News

Early Detection and More Аffordability for NETs – Let’s Join World Cancer Day

World Cancer Day takes place every year on February 4th and is the uniting global initiative to raise the profile of cancer in a positive and inspiring way. Spearheaded by the Union for International Cancer Control (UICC), the day aims to save millions of preventable deaths each year by raising awareness and improving education about the disease while calling for action from governments and individuals across the world.

INCA continuously joins World Cancer Day with the full understanding of the need for NETs to be part of the general cancer awareness campaigns and cancer policies.

February 4th 2020 marks the 20th anniversary of World Cancer Day. This year’s anniversary campaign will try to share more information on cancer prevention in a concerted manner. UICC invites us all to take part in the ‘I Am and I Will’ campaign, which calls on each person to make a commitment – big or small – and recommends to:
•    Use World Cancer Day as an opportunity to improve the understanding of cancer risk factors and share your knowledge with others
•    Make a commitment to reduce your cancer risks like quitting smoking, eating healthily, exercising regularly, and using sunscreen
•    Take advantage of what the health system can provide, including getting a check-up, getting screened, and getting vaccinated

Although neuroendocrine cancers fall in the definition of rare forms of cancers and NET cancer risk factors are still unclear, prevention can be addressed by asking for more screening for NETs and more knowledge among healthcare professionals. The NET community is resolute to work with decision-makers to increase affordability of all treatments and tests for NET patients and improve the overall care of NETs, while advancing meaningful research.

To share all these messages, INCA joins the ‘I Am and I Will’ campaign via its social media platforms on Facebook and Twitter. Let us support the global effort to reduce cancer risk factors and ask for more affordable cancer services, including for NETs.

INCA and the Global NET Medical Leadership Join Efforts to Improve Access and Research

At the INCA/ENETS Symposium to be held on March 13th, 8:30 am as part of the 17th Annual ENETS Conference for the Diagnosis and Treatment of Neuroendocrine Tumor Disease in Barcelona, INCA and global leading NET experts will focus on ways to improve research and access.

An esteemed panel of international thought-leaders in NETs: Dermot O’Toole, Simron Singh, Emily Bergsland and Jaume Capdevila will join the discussion about making NET research more meaningful and patient-focused, and recognizing earlier diagnosis as a priority. The patient perspective will be relayed by Simone Leyden, INCA President, Cathy Bouvier, INCA President-Elect, Teodora Kolarova, INCA Executive Director, Dirk Van Genechten, INCA Board Member, Mark McDonnell, INCA Treasurer, and the INCA member representatives Elyse Gellerman (NET Research Foundation, USA) and Eddy Deneckere (vzw NET & MEN Kanker Belgium). Best practices of patient involvement in research will be shared along with the results of SCAN and other surveys examining the unmet needs of the NET patient community.

All ENETS 2020 Conference participants who are interested in the above are invited 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

MEN2B and Me: Ethan Film Shortlisted for Charity Film Award

Ethan Holliman was diagnosed with MEN2B at the age of 12 by which time the medullary thyroid cancer (MTC) that is a part of the syndrome had already spread beyond his thyroid gland. MEN2B is best diagnosed within the first year of life, at which time there is a greater chance of surgical cure for the MTC which arises in early childhood. Since his diagnosis, Ethan has been through extensive surgery, as he is affected by other aspects of the condition. Together with his family, however, he has been determined to raise awareness of the impact of MEN2B and of the need for early diagnosis. The Hollimans were therefore keen to be involved in AMEND’s 2019 project to produce 3 patient experience films. In fact, 4 films were produced: MEN2B and Me: Ethan (his own words) was an additional short film produced by Red Goat Productions, because Ethan’s input was so profoundly moving. In 2019, AMEND entered the film into the Charity Film Awards and in January 2020, it was announced that the film had been shortlisted to go forward to the next stage: the judges. AMEND would like to thank the Hollimans, Red Goat Productions, as well as everyone who voted for the film during the first stage of the Charity Film Awards.

We are all keeping our fingers crossed for Ethan’s film in the next phase of the Charity Film Awards!

Carcinoid Cancer Foundation Facebook Live Event on PRRT

The Carcinoid Cancer Foundation hosted a special Facebook Live Event on January 23, featuring neuroendocrine tumor (NET) expert Dr. Jonathan Strosberg for an in-depth discussion about Peptide Receptor Radionuclide Therapy (PRRT).
Participants were able to submit questions ahead of time as well as ask them live. This Facebook Live Event was hosted by Rain Bennett, a longtime CCF filmmaker and dear friend of the NETs community.
Watch the full Facebook Live Event here.

CNETS Canada Funds NET Cancer Research in Canada

CNETS Canada was formed in 2007 to assist the Canadian community with this type of disease. Today, CNETS Canada is widely recognized by patients and the medical community across Canada, as an organization that helps improve the quality of life and survival for NET patients. CNETS Canada has been able to achieve positive change and improve the lives of NET patients in Canada through priorities and objectives: raising awareness of the disease and the latest available diagnostics and treatments; providing support and education for Canadians on all aspects of NETs, ensuring they have all the information they need to make informed decisions, advocate on behalf of patients for polices to support the best care and treatment options, and provide funding to support Canadian NET cancer research.

One area where CNETS Canada has had a positive impact has been the community dedication to raising funds that support NET cancer research in Canada. The NET patient community has continually demonstrated a strong commitment to supporting CNETS Canada's fundraising efforts. CNETS Canada has been supporting NET-research since 2011, initially through a partnership-based approach and since 2016 through their independent Research Funding Framework. This is the third year in which they are offering research grants across Canada for NET research based on their new framework.

To date CNETS Canada has provided over $500,000 in funding towards specific high-priority NET research projects, that will have a direct and meaningful impact on the lives of NET patients in Canada. The high-priority NET projects that are funded each year are determined through widespread consultation with the NET patient community.

The NET community in Canada continues to raise awareness and surpass fundraising goals to support NET cancer research in Canada. CNETS Canada would like thank all the participants, supporters and donors, who have made an impact on the lives of NET cancer patients in Canada!

More information on CNETS Canada’s NET Research Grant Recipients

The NET Patient Foundation Is Changing Its Name

The NET Patient Foundation is delighted to announce that it is rebranding and will soon be known as ‘Neuroendocrine Cancer UK’. This change is to better reflect its community, building on the foundation that has been laid down over the last 17 years (2002 - Living with Carcinoid, 2006 - NET Patient Foundation, 2020 - Neuroendocrine Cancer UK). A new website with updated information resources will also be launched.

“The ethos and mission of the charity remains the same - to support all affected by neuroendocrine cancer: to support and inform patients and families from diagnosis, enabling access to the best care and treatment, whilst stimulating Neuroendocrine Cancer research, increasing national awareness and influencing improvements in outcomes. Terminology of the disease has changed and we want to reduce confusion, and increase awareness of this cancer type. By giving us a more focused and explanatory name, we can better serve our patient community.” said Catherine Bouvier, CEO of the organization and INCA President-Elect.

NETRF's Pursuit of NET Organoids

NETRF gave an Accelerator Award to Hans Clevers, MD, PhD, Hubrecht Institute, Netherlands, to develop NET organoids to expand the field’s preclinical NET research tools in 2017. An organoid is a laboratory replica of tumor cells that researchers can study to understand the nature of neuroendocrine cancer and to test new treatments. This study won the best scientific poster award at the 2019 annual meeting of the European Neuroendocrine Tumor Society (ENETS) in Barcelona.

The Clevers lab has tried to grow 44 organoids from NET tissue samples donated for research (from tumors in small intestine, lung, and pancreas). Overall about half of the samples have grown into organoids. The lung samples have a 100% success rate. But only about one in three pancreas tissue samples successfully produce an organoid.

Dr. Clevers’ lab will study organoids made from healthy and NET cells to understand how NET cells develop. He and his team will try to isolate what genomic mutations or cellular communication errors occur. If they identify what goes wrong they will then try to recreate that error using a gene-editing technique called CRISPR/Cas9. Reproducing the formation of NET cancer cells will help confirm the exact path of the disease.

Once the cancer cell development process has been mapped, researchers will look for an opportunity to interrupt this incorrect cellular cycle. They call this an actionable target. Therapies have been developed to act upon specific targets or genomic mutations, for example, by turning cell signaling on or off that is sending the incorrect instruction to create cancer cells.

Organoids can serve as an efficient way to test various therapies in the laboratory (preclinical testing) for large-scale drug testing. The technology could also be used to advance precision therapies. An individual’s tumor tissue, obtained from a biopsy, could be used to grow a person’s own organoid. Researchers could then test a therapy on the person’s organoid first to see if it works. That could help improve the safety, efficiency, and precision of care for individual NET patients.

Watch the full video on NETRF's YouTube channel.

Pheo Para Alliance Monthly Online Support Meeting

Those affected by pheo para are invited to join the recently launched monthly online support meeting on Tuesday, February 4th. The meeting is led by patients and caregivers, and everyone will have an opportunity to introduce themselves and share their pheo or para journey. Meetings are held on the first Tuesday of the month at 4:30pm PT/7:30 ET. This meeting is for peer support purposes only. Anyone seeking medical advice should contact their physician.

Register for the meeting here

The Unicorn Foundation Hosts NET Patient Forum in Wagga Wagga

The Unicorn Foundation invites people affected by neuroendocrine tumors (NETs), families and friends, and interested health professionals to their free NET patient forum in Wagga Wagga. Participants will be able to join guest experts in discovering the latest developments in the management of NETs with the focus on "NETs - Multidisciplinary Care".

Guest speakers will include:
Dr. David Chan - Overview of Neuroendocrine Cancers, the Role of the Multidisciplinary Team, Treatment and Management of Symptoms / Carcinoid Syndrome
Meredith Cummins - Living with NETs, PLANET Registry, the Unicorn Foundation support & services
Katie Golden - A Patient's Experience

Click here for more information about the event.

Medical News

Policymakers Join Experts at the European Parliament for Radioligand Therapy Report Launch


Ahead of the European Commission's official launch of 'Europe's Beating Cancer Plan', The Health Policy Partnership and an expert-led steering committee met at the European Parliament in Brussels to launch a new report:, “Radioligand therapy: realising the potential of targeted cancer care”.

The event, co- hosted by Tanja Fajon MEP (S&D, Slovenia) and Ewa Kopacz MEP (EPP, Poland), featured presentations on the growing importance of radioligand therapy as part of cancer care, led by patient representatives and experts in oncology, nuclear medicine and European health policy. Speakers considered the political and practical actions needed to create an enabling environment for radioligand therapy in the EU to better integrate it into current oncology approaches.

Read the full article here

The Patient Voice at EANM Focus Meeting on Molecular Imaging and Theranostics in Neuroendocrine Tumors

The European Association of Nuclear Medicine (EANM), the world-leading society for nuclear medicine, molecular imaging and theranostics, is holding the third edition of the EANM Focus Meeting, which is on “Molecular Imaging and Theranostics in Neuroendocrine Tumours”. The EANM Focus Meeting gathers a multidisciplinary group of experts and opinion leaders from all over the world in Athens, Greece, for three intensive days from 30 January till 1 February, 2020. The meeting is organized in close collaboration with the European Neuroendocrine Tumor Society (ENETS), and a large faculty of oncologists, gastroenterologists, endocrinologists, surgeons, nuclear medicine physicians, radiologists, clinical and basic scientists and patient advocates will lead and contribute to the discussions. The patient perspective will be presented by Catherine Bouvier, INCA President-Elect and CEO of Neuroendocrine Cancer UK. An in-depth overview of the current state-of-the-art and future directions in the management of neuroendocrine tumors will be provided, with a focus on the role of imaging and therapy in general and nuclear medicine in particular. Based on the conference’s results, a consensus statement will be produced.

For more information check the full program of the meeting.

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