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

Four New Member Organizations and One Associate Join INCA

INCA is pleased to announce that our family of member organizations has just grown with four new full Members and one Associate. With this, INCA now stretches to 6 continents, expanding for the first time to South America and Africa, and covering a larger part of  Europe. NET España, NET Italy, Victory NET Switzerland and  Fundación ACIAPO from Argentina were accepted as Members and AZNETS from Kenya – as an Associate Member of INCA. INCA membership criteria stipulate that an organization has to be in existence for a minimum of 2 years in order to apply for full membership.

INCA is proud to welcome our newest members and very much looking forward to helping these organizations advance their work in support of the NET community. 

Each of our new members would be presented in the upcoming issues of the INCA newsletter.

INCA Unmet Needs Survey Presented at Lung Cancer Europe Annual Meeting

Photo: Teodora Kolarova  INCA Executive Director at the LuCE Annual Meeting

INCA Executive Director Teodora Kolarova presented the success story of the INCA Unmet Needs Survey as best practice in evidence-based advocacy at the Lung Cancer Europe Annual General Meeting on April 13, 2019 in Geneva. Over 25 representatives of national lung cancer patient groups from Europe were impressed by the impact generated from the survey results via publications and presentations with significant recognition at all major medical conferences in the field, and lobbying for improved access to diagnostics and treatment at regional and local level. Lung NETs account for over 20% of all lung cancers.
INCA Members' News



AMEND is supporting a free one-day scientific meeting at the Francis Crick Institute in London on Monday 10 June.  RET@CRICK will explore the different expressions of the RET protein.  RET is involved in a diverse range of diseases, including NET syndromes, multiple endocrine neoplasia type 2, medullary thyroid cancer, Hirschsprung’s disease, lung cancer, Parkinson’s disease and pituitary disease.  A world-leading line-up of both clinical and research speakers will explore RET’s diversity and how researchers may be able to work in synergy.  For more information and to book a free place, visit RET@CRICK's website.  The event is also sponsored by the Francis Crick Institute, the Society for Endocrinology, Blueprint Medicines and Fight for Life.



A new explanatory video on PRRT has just been released by APTED for the French-speaking community. The video is published on APTED's YouTube Channel and shows in just 3 minutes how PRRT works. Subtitles could be easily added in any language.
Watch the full video here.

CCF Launches New Website for PRRT and Gallium-68 PET/CT Scan

The Carcinoid Cancer Foundation is excited to announce the launch of their new website dedicated to providing information about PRRT and the Gallium-68 PET/CT scan. This site also includes an interactive map to locate facilities where PRRT and/or the Gallium-68 PET/CT scan are being offered. The map will be updated regularly as additional facilities provide these services. Visit CCF’s new website.

CNETS Canada Conference Presentations Available Online 

CNETS Canada’s 2019 National NET Patient Conference brought together over 175 NET patients, patient leaders, caregivers and their families from across Canada.

The conference program showcased the latest in NET cancer diagnosis and treatment in the Canadian context. The speakers included 20 multidisciplinary NET specialists and medical professionals who shared their experiences, knowledge and expertise in NETs.

We are delighted to share that the 2019 National NET Patient Conference presentations are now available on CNETS Canada's website!

Click here for CNETS Canada’s 2019 National NET Patient Conference presentations.

Treatment Update:
Cancer Care Ontario has announced that as of April 1st, 2019, Ontario patients with neuroendocrine tumours (NETs) meeting eligibility criteria are able to have their 68Ga-DOTATATE PET scan in Ontario as part of “PET NET”, a Health Canada approved registry.  The introduction of 68Ga in Ontario, means we now have clinical trial access to Ga68 in BC, Alberta, Ontario and Quebec.

Updated Patient Information from NPF

Producing relevant patient information for this diverse group of neoplasms is a costly and time consuming process, but one that the NET Patient Foundation feels as one of its key pillars of activity. The NPF have various updated materials for 2019, including Version 2 of 'The Handbook’ (Version 1 has been translated by Victory NET into French and German too), 20 new factsheets to provide up to date and clinically accurate information about diagnosis, treatment and follow up, and an updated version of Gut Surgery, How Diet Can Help’. The factsheets fit into NPF's patient information pack for all new patients, and compliment ‘The Handbook’. A new guide to ‘Looking after Yourself’ post diagnosis is due out in the next few weeks, along with 2 more factsheets about bone metastases an diarrhea (the reason we get it, and how to manage it).

For more information and access to resources, click here.

June 6-8 2019 Pheo Para International Conference Approaching

INCA reminds of the fast approaching dates for the PheoPara Conference which would take place in the beginning of June. This is the only planned patient, caregiver, family, and medical professional conference dedicated solely to pheo and para. You can still sign up here.

Unicorn Foundation Australia Launches Be Fair

Unicorn Foundation, Australia, is  launching the "Be Fair" campaign to shine a light on the often unfair and imbalanced distribution of funding to cancer organisations. The campaign addresses the government of the day to provide equitable support for all cancer types, as the type of cancer shouldn't determine the level of care and support. An informative video was released today and the organization would like to thank all wonderful patients who volunteered their time to take part and spread this important message. To get behind this campaign Unicorn Foundation has letter templates and other information available on their website for use.  Help spread the message far and wide to "Be Fair".

Medical  News

EUS-RFA Rapidly Emerging as Feasible Treatment for Pancreatic Neuroendocrine Tumors

According to study results recently published by The Journal of Clinical Endocrinology & Metabolism endoscopic ultrasound-guided radiofrequency ablation (EUS-RFA) has demonstrated to be a viable treatment modality relatively safe and effective in select patients with pancreatic neuroendocrine tumors.
Read more about the study and its outcomes here.
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