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

INCA Announces Change of President


Photo: Catherine Bouvier, the new INCA President
This month, Simone Leyden, the Unicorn Foundation Australia CEO and INCA President from February 2018 to February 2020 passed the baton over to Catherine Bouvier, Neuroendocrine Cancer UK CEO.

INCA is incredibly thankful for Simone’s instrumental leadership which has led to amazing progress, achievements and new milestones reached for the organization during her term in the past two years. During Simone’s term INCA evolved as a well-positioned international group of patient advocates, sharing experience and knowledge with all NET medical societies around the world and collaborating with the key global players in cancer advocacy. INCA today is a collective of 26 patient organizations from 6 continents, all with the shared vision: A world where all patients with neuroendocrine cancer and genetic neuroendocrine tumors, get a timely diagnosis, optimal treatment, support and care and ultimately a cure.
Catherine Bouvier who has officially assumed office in February is very much focused on building on this momentum.

Here are a few words from the new INCA President:

“I am honored to be given the opportunity to drive forward the ongoing work of the organization.
During my term as INCA President, I hope to see growth across all our 3 strategic pillars through truly collaborative cross functional working. This will lead to improving impact and outcomes for patients who follow a less common pathway, establishing patient experience as being on a par with clinical effectiveness and safety, the provision of standardized, useful and accurate patient information, an increase in patient driven research, our membership, education and awareness across this diverse and complex disease area.

INCA is the global voice and umbrella organization for the Neuroendocrine Cancer and Genetic Neuroendocrine Tumor Community, recognizing the exceptional work done locally by both our membership organizations and individual patient advocates.

As the well-known saying goes: ‘if you want to go fast, go alone, but if you want to go far, go together’, and I very much intend for a united approach, and look forward to working with each and every one of you to improve outcomes for all.”, says Catherine Bouvier, Co-Founder and CEO of Neuroendocrine Cancer UK.

With the committed leadership of Catherine Bouvier and a strong and dedicated Board of Directors, INCA will continue to work to make a difference for the NET community.

The First Official Open Access Paper on the INCA Unmet Needs Survey Now Published in the International Journal of Cancer Print Edition

INCA is excited to announce that the paper "Unmet needs in the international neuroendocrine tumor (NET) community: Assessment of major gaps from the perspective of patients, patient advocates and NET healthcare professionals" is published in the March print edition of International Journal of Cancer. The Unmet Needs Survey was championed by INCA, working in close collaboration with the NET medical societies around the world. The survey findings were published online in Union for International Cancer Control’s (UICC) International Journal of Cancer just prior to World NET Cancer Day on November 10, 2019 to reinforce our efforts to raise awareness about the plight of neuroendocrine cancer patients. INCA believes that the important recommendations by the authors including improving correct and understandable patient information at diagnosis, improving access to diagnostics and theranostics, access to multidisciplinary teams and specialist centers, greater education of nurses and HCPs and including patient input into research will get further exposure via the IJC print edition.

INCA Joined Rare Disease Day

This year Rare Disease Day fell on February 29th, the rarest day of February, transforming it into a special occasion to raise our collective voice and advocate for the right of people living with a rare disease to have equitable access to diagnosis, treatment and care.

INCA supported Rare Disease Day with a week-long campaign via its social media platforms by sharing the collective message that patients with neuroendocrine cancers and genetic neuroendocrine tumors are many in terms of absolute numbers and deserve equity in access to diagnostics, treatment and care, as well as Universal Health Coverage.

INCA would like to thank its member organizations who provided their valuable input for this campaign.

INCA Members' News

AMEND Develops a New Identity for the UK Phaeo/Para Syndrome Community

After canvassing AMEND’s membership in 2019 about potential rebranding, it became evident that AMEND’s existing SDH / PPGL Syndrome members were the only community that did not feel that the AMEND branding reflected their diseases well enough. AMEND therefore took the decision to create a new identity for this community, called SDH Support UK.  SDH Support UK will be a continuous project under the AMEND umbrella, in the same vein as their group, ACC Support UK, which provides services for UK adrenocortical cancer (ACC) patients. New patient literature on the Syndromes is in production, together with a set of patient experience films.  Subject to funding, a new, dedicated website for SDH Support UK will be developed where all the resources produced will be housed.

Children, Teens, and Young Adults with NETs Facebook Live Discussion

The Carcinoid Cancer Foundation hosted a special Facebook Live Event on February 11, featuring neuroendocrine tumor (NET) expert Dr. M. Sue O'Dorisio, to discuss challenges that children, teens and young adults with NETs face.

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

Introducing NeuroEndocrine Cancer Australia

The Unicorn Foundation is excited to announce that it will be rebranding to NeuroEndocrine Cancer Australia from next month.
After ten years since its inception, the Unicorn Foundation has become a well-respected name within the neuroendocrine cancer community. Yet despite this and the rising incidence of neuroendocrine tumors, general awareness about neuroendocrine cancer is still very low.

“To create greater recognition for the foundation and for the disease generally, we believe that introducing neuroendocrine cancer into our name will help to raise the profile of neuroendocrine tumors amongst the Australian general public, funders (government/non-government) and the medical community (GPs and specialists).
Whilst our name will be changing to increase awareness around the disease, the five pillars that govern our organization will remain the same as we continue to provide support, education, research, awareness and advocacy to Australian neuroendocrine cancer patients.”, says Simone Leyden, CEO and Co-founder.

Over the next few weeks the foundation’s website, social media handles and email addresses will start to redirect to NeuroEndocrine Cancer Australia.
The shield with the unicorn’s horn, which also signifies the organization’s stepping-stones to finding a cure, will remain as the supporting logo to pay homage to their original branding.

Read more about the Unicorn Foundation rebranding.

Neuroendocrine Cancer UK’s MIND the Gap at the BPOS Conference

The MIND the Gap campaign was launched in 2019 by Neuroendocrine Cancer UK and recently showcased its aims and offered services at the British Psychosocial Oncology Society’s Conference, which took place in Edinburgh on February 26-28 this year.

Neuroendocrine Cancer UK exhibited a poster at BPOS 2020, highlighting the need for a holistic approach towards NET patients care and treatment. MIND the Gap is focused on helping neuroendocrine cancer patients carry not only the physical, but the psychological burden of a complex disease.
For more information on MIND the Gap click here.

NETRF Awards $3.5 Million in Grants to 12 Researchers in U.S., Europe, and Israel

The Neuroendocrine Tumor Research Foundation (NETRF) today announced $3.5 million in neuroendocrine tumor (NET) research grants to fund 12 projects around the world in pursuit of more precise treatments.

This round of funding features multiple new fronts for NETRF. The Foundation granted two inaugural Mentored Awards for early career researchers. There were also new areas of NET inquiry. For the first time, NETRF is funding pheochromocytoma and paraganglioma research, including an evaluation of a novel radiotracer for imaging adrenal NETs. NETRF also funded four research projects in lung NETs, an area that has not previously received the attention of other NET sites. NETRF also approved grants to study a potential cause of small intestinal multifocal tumors and to evaluate the role of the gut microbiome in carcinoid syndrome.

Seventy-five percent of the grants were awarded to research institutions that are new to NETRF, including international research at Erasmus MC, University Medical Center Rotterdam, Netherlands; Hebrew University of Jerusalem, Jerusalem, Israel; International Agency for Research on Cancer (IACR-WHO), Lyon, France; Istituto Auxologico Italiano – Istituto di Ricovero e Cura a Carattere Scientifico, Milan, Italy; and Weizmann Institute of Science, Rehovot, Israel.
Learn more about these new research projects

The NETRF grant process is a competitive and structured peer-reviewed process. The Foundation is currently accepting applications for its next grant cycle. Applications must be received by March 9, 2020.

Masterclass on Neuroendocrine Tumors in Belgium

Dirk Van Genechten, Vice-President of vzw NET & MEN Kanker Belgium and INCA Board Member, took part in a masterclass on Neuroendocrine Tumors in Antwerp, Belgium, organized by the NETwerk Antwerpen-Waasland (ENETS Center of Excellence). Dirk Van Genechten was a key presenter in the session Patient-centered care in NET: uniting all stakeholders. He expanded on the topic of why the patient perspective on NET care is essential and highlighted that when taken into consideration, it improves patient outcomes.

With the leading message of “Treat the person, not the disease”, patient-centered care takes into account patient experiences and needs which give value both to the patient and the healthcare professional.

Medical News

WHO Outlines Steps to Save 7 Million Lives From Cancer

The World Health Organization (WHO) and the International Agency for Research on Cancer (IARC) released coordinated reports on World Cancer Day, February 4th, addressing government calls for additional research and potential programs and policies to improve cancer control.
“At least 7 million lives could be saved over the next decade, by identifying the most appropriate science for each country situation, by basing strong cancer responses on universal health coverage, and by mobilizing different stakeholders to work together”, said Dr Tedros Adhanom Ghebreyesus, Director-General, WHO.

Read the “WHO report on cancer: setting priorities, investing wisely and providing care for all”.

"The past 50 years have seen tremendous advances in research on cancer prevention and treatment,” says Dr. Elisabete Weiderpass, Director of IARC. “Deaths from cancer have been reduced. High-income countries have adopted prevention, early diagnosis and screening programmes, which together with better treatment, have contributed to an estimated 20% reduction in the probability of premature mortality between 2000 and 2015, but low-income countries only saw a reduction of 5%. We need to see everyone benefitting equally.”

Read the “World Cancer Report: Cancer Research for Cancer Prevention” by IARC.

Read the full article here.

The Economic Impact on Australian Patients with Neuroendocrine Tumors

A new article titled “The Economic Impact on Australian Patients with Neuroendocrine Tumours” which shows insights from a recent survey among neuroendocrine cancer patients in Australia was published on February 19, at SpringerLink. The study aims to determine the extent and factors influencing the financial consequences of living with NETs and their effect on quality of life.

Click here to read the abstract.

Do You Know About the COMPETE Phase III Clinical Trial?


COMPETE is an international, prospective, randomized, controlled, open-label, multicenter phase III study. The trial will evaluate the efficacy and safety of the targeted radiopharmaceutical n.c.a. Lutetium-177-Edotreotide (PRRT) compared with the standard therapy in patients with neuroendocrine tumors of gastroenteric or pancreatic origin (GEP-NET). It is intended specifically for patients who have progressive NETs which have spread to other parts of the body (metastatic) or that cannot be removed with surgery.

Click here to read the patient friendly COMPETE booklet.

If you are interested in taking part in the study, please ask your attending clinician whether you comply with the inclusion criteria. There are 38 site locations around the globe, click here for more details.

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