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INCA Monthly Newsletter - December 2018
INCA Members' News
Medical News
Holiday Dish Ideas

Happy New Year from INCA

Dear Friends,

As we reflect on 2018, it has been a year of tremendous growth and activity here at INCA. We are proud of the recognition we have received for the Unmet Needs activity, which has raised greater awareness within the medical community. World NET Cancer Day reached an even larger audience than ever before through more translations and reinvigorated website, and provided a fantastic platform for patients and carers from around the globe to get involved and talk about NETs. And this year INCA has been represented at all the large medical society meetings, putting the patient perspective front and centre of discussions, as we strive for better research, standards of care, treatment and outcomes for NET patients around the world.

I would like to thank our fantastic, hard-working board for a great year, and especially our outgoing members Ron Hollander and Tore Aasbu for their irreplaceable dedication to our vision. Thank you to Teodora our fabulous Executive Director who works tirelessly to keep the organisation on track, and thank you to you our members, our medical society champions and our industry partners for giving up so much time and energy to get our work done.

We hope you all had a very Merry Christmas and wish you a happy and safe new year and look forward to further delivering on our vision in 2019.

Simone Leyden                                                    
INCA President
CEO The Unicorn Foundation

INCA and ENETS Joined Efforts to Move NETs Higher on the EU Agenda

(from left to right) Regine Reinstorf - ENETS Executive Director, Teodora Kolarova, INCA Executive Director, Dermot O'Toole - ENETS President, Martyn Caplin - Lead of the EURACAN NET Domain 

December 4th was a busy day of outreach meetings in Brussels to draw attention to NET as a rare form of cancer that has never had any special focus or dedicated funding within the EU. INCA and ENETS  took the chance to introduce NETs to  Members of the European Parliament from the Industry and Research Committee and Public Health Committee, and scope opportunities to improve research in NETs and access to optimal treatment and care for all NET patients. The potential of Horizon 2020 and the upcoming Horizon Europe EU research programs, as well as other relevant funding instruments were also discussed with the Head of the Scientific Department of the European Research Council Executive Agency, Jose Labastida, and the Head of European Reference Networks with DG Sante, Enrique Terol. Follow-up meetings with the European Commission and potentially other stakeholders to be organized in the beginning of 2019, and relationships to be further explored in view of the upcoming EU elections in June.

INCA on the Crucial Importance of Collaboration in the Latest ESE News


INCA’s position on the patient advocacy role has been published in the latest autumn edition of the reputable European Society of Endocrinology (ESE) newsletter. In this feature article, INCA Executive Director, Teodora Kolarova elaborated on the importance of working towards closing the gap between the patient and healthcare professionals’ perspectives to ensure better quality of care for NET patients around the world. The Unmet Needs Survey results clearly capture the discrepancies between patients’ and healthcare professionals’ expectations of the quality of the information provided. Building on these findings, INCA addressed three key points of interaction between patients, advocacy leaders and medical professionals, which need improvement: the quality of information provision, including the adoption of a patient-centered approach in medical decisions, involvement of patients in research at the design stage and access to the highest standards of care. We need to understand each other’s perspectives better to work together more effectively for improved diagnosis, care and research. 
The reasoning behind the need for enhanced collaboration is highlighted by INCA: better understanding of patient priorities and the practical impact on the disease on patient everyday life would lead to improved design of clinical trials, thus providing for more efficiency and more funding opportunities for advancing research in NETs.
You can read the full article here.

INCA Members' News

AMEND to Support a New RET Research Collaborative Network 


AMEND are delighted to be providing administrative and organisational support to the convenors of a new and exciting RET Research Collaborative Network, called RET@CRICK, whose inaugural meeting will be held at The Francis Crick Institute in London on 10th June, 2019.  Germline (in DNA) and somatic (in tissue) RET gene mutations are responsible for a range of rare diseases, including multiple endocrine neoplasia type 2 (MEN2), familial and sporadic medullary thyroid cancer (MTC) and phaeochromocytomas, and Hirschsprung’s disease (HD).

The RET Research Collaborative Network will facilitate the exchange of ideas and collaborative initiatives leading to innovative projects and grant applications, and will coordinate research with ongoing clinical care to encourage recruitment into laboratory based projects and clinical trials.  The RET@CRICK meeting is envisaged as a stepping stone towards this goal.

The one-day event will bring together scientific and clinical leaders in their field as well as junior doctors and researchers who can present their research in a poster format.  The day will consist of four 90-minute sessions, each comprised of a triad of Scientific, Clinical and New Research talks, followed by an open forum discussion and networking breaks.  Presentations will cover important aspects of RET-related diseases including MEN2, MTC, Hirschsprung’s disease, animal models and RET targeting in oncology, as well as the role of RET in development and physiology.  RET@CRICK is an excellent opportunity for both scientists and clinicians to test new ideas, find potential collaborators and get engaged in world class translational research.

For more information and to book a place, please click here.

APTED Launched a Brand New NET Patient-Oriented Website

Since the end of 2018, the French speaking NET community has its own space to check for full information and latest updates about NETs.
The website TNEinfos has been developed by APTED with the support and expertise of doctor Julien Forestier. TNEinfos presents  easy- to-read information about the disease and the types of NETs, symptoms, ways of treatment, and includes a section containing NET-specific terminology  to equip readers with the relevant vocabulary. Have a look and navigate through the website from here.

CCF's Life Is a Gift

CCF’s 50th anniversary video series continues with “Life is a Gift.” Mark was only 11 years old when he was diagnosed with lung neuroendocrine cancer. Here's how life changed for this husband and dad who is now in his thirties. Watch the video.

CNETs Canada Closes 2018 with an Interactive Webinar for Patients

The CNETS Canada team sends all its best wishes to all members and supporters  
Just before the end of the year, CNETS Canada organized an interactive webinar on the topic of rectal NETs. Guest speakers Dr. Shereen Ezzat and Dr. Sylvia Asa gave comprehensive presentations on rectal NETs followed by an open session of questions and answers.

 NET Patient Foundation Attended the UKINETs
16th Annual Conference

Catherine Bouvier, NET Patient Foundation (NPF) and NPF Patron Professor Martyn Caplin  

December is the month for the UKINETs Conference - one last push before the wind down to the Christmas holidays. The day was focused on educating and stimulating discussion on research amongst the many specialities involved in the care of patients with Neuroendocrine Neoplasms. It was a packed programme this year and it was especially great to have some really eminent speakers from the global NET community, including Marianne Pavel from Germany, who gave an amazing and comprehensive talk on 'Personalised Medicine - Which Treatment for Whom'. She had no definitive answers, but pushed for the urgent need for more earlier predictive markers to understand which treatment would work best in patients. Other international speakers were Lisa Bodei from the USA, Eric Baudin from France and Nicola Fazio from Italy.
It was also so encouraging to have had 12 applications for the NPF/UKINETs research grant this year and to have 2 winners! One of the winners is part of the team running the Tracer-X Lung Cancer Project and we are delighted that Lung NENs will now be included in the cohort. The TRACERx (TRAcking Cancer Evolution through therapy (Rx)) lung study is a multi-million pound research project taking place over nine years, which will transform our understanding of non-small cell lung cancer (NSCLC) and take a practical step towards an era of precision medicine. The study will uncover mechanisms of cancer evolution by analysing the intratumour heterogeneity in lung tumours from approximately 850 patients and tracking its evolutionary trajectory from diagnosis through to relapse. At £14 million, it’s the biggest single investment in lung cancer research by Cancer Research UK, and the start of a strategic UK-wide focus on the disease, aimed at making real progress for patients.
The other worthy winner was Kate Lines who works with Professor Raj Thakker, and will continue her work on the molecular genetic study of pancreatic neuroendocrine neoplasms.

May we take this opportunity to wish all our friends around the world congratulations on the all the work they have done to support the NET community, and hope you all have a peaceful Christmas.

$40,000 for Innovative Research for 2019 Thanks to the Walk in USA's Capital Region

On November 10th, World NET Cancer Awareness Day, 177 walkers, 18 volunteers, and many family dogs turned out for the first-ever Washington DC Walk for Carcinoid Cancer.
Sanjiv Jain, CEO, eGlobalTech organized a 2-mile fundraising walk to honor his late wife, Sonya Jain, and to promote awareness about neuroendocrine cancers. Sonya Jain, founder, and former CEO, eGlobalTech, passed from neuroendocrine cancer in December 2017, after a long battle with the disease. According to her husband, “In spite of fighting cancer for almost 15 years, Sonya lived life to the fullest – she founded eGlobalTech, raised two beautiful daughters, played sports, enjoyed yoga and traveled worldwide during her short life.”

The event raised more than $40,000 for the Neuroendocrine Tumor Research Foundation to fund innovative research to better understand the disease and for improved treatments.  Congratulations to all who participated and supported the DC Walk for Carcinoid Cancer!
Medical  News

First Clinical Trial Workshop for CommNETs

The Commonwealth Neuroendocrine Tumour Group (CommNETs) formed in 2015 organized its first clinical trial workshop in the beginning of December. Over 3 days, from 8th until 10th of December, more than 30 NETs researchers, clinicians and patient advocacy groups’ representatives from Australia, New Zealand and Canada discussed how to collaborate in clinical trials. Each of the trial concepts was presented and followed by a robust discussion around patient preferences, ability to recruit, on the design, feasibility, barriers and opportunities for collaboration across countries, what could be achieved. A vote determined four concepts to be further developed in the coming months. For more info on the workshop, please click HERE

The Prognosis of NETs Differs Based on the Site of Origin

The Cancer Network, home of the journal ONCOLOGY, has recently published a review of the key finding that NETs prognostics differ significantly by the tumor site of origin.  The material is anchored in one of the few researches in the NETs field, recently published in the Cancer Management and Research. Conclusions have been drawn from observing 73782 patients’ data, registered in the Surveillance, Epidemiology, and End Results (SEER) database for the period between 1977 and 2014. The lung/bronchus was the most common site of NETs - 30.6%, followed by the small intestine (22.2%), rectum (16.2%), colon (13.4%), pancreas (10.8%), and stomach (6.8%). Some of the conclusions name NETs in the rectum had the best prognosis, while those in the pancreas had the worst. Primary tumor sites might be one of the most useful outcome predictors in patients with NETs.

In the recent years data show NETs to be of increasing incidence but the clinical characteristics and prognosis remain poorly understood. Such exploratory research for factors affecting the disease development might one day give a positive breakthrough in scientific knowledge about this form of tumor.

Full article

Holiday Dish Ideas

The Good Old (healthier) English Breakfast

The new year is coming, and the holidays are knocking on the door. We have assembled healthy festive recipes with flavors from all around the world to ensure a good mood. Check INCA Facebook page to follow all the suggestions.

Breakfast comes first, with the Special Contribution of our Member NET Patient Foundation, UK

 • 4 small potatoes, peeled
 • 4 tbsp olive oil
 • 8 rashers of lean bacon
 • 4 eggs
 • 1 tbsp vinegar

To know: Potatoes are a good source of carbohydrate if you have problems eating bread made from wheat. Grated potatoes can be quickly made into an Alpine style rösti and provide a tasty platform for bacon, eggs and tomato and other things too. This version has so much less fat than most recipes for rösti and it works brilliantly if you use a non-stick pan.
A rosti topped with your favourite ingredients makes a great breakfast dish or brunch and it is just the thing to set you up for the day. It can be a colourful, sustaining, nutritionally balanced meal full of savouryflavours and an interesting array of textures.

How to prepare:
This rösti will need to be cooked in batches for four people. Coarsely grate the potatoes into a bowl. Take handfuls of the grated potato and gently squeeze some of the moisture from them over the sink. Do not spend too much time on this but removing some moisture from the raw grated potato makes a better rösti.
Heat a tablespoon of oil in a medium sized non stick frying pan and add about quarter of the grated potato.  If you have a good quality non stick pan, you can reduce the amount of oil used to a smear.  Allow the rosti to cook for a couple of minutes and then shape it into a flat cake measuring 20cm/8 in across, pressing down lightly with a spatula to compact the grated potato.
Cook the rösti for three or four minutes, then gently shake the pan to loosen the rösti from the base and continue to cook until the underside is golden and crisp. (Just flip up a portion of the rösti with a palette knife to see how well it is cooking.)
Place a plate on top of the pan and invert the pan so the rösti sits on the plate cooked-side up.  Add another smear of oil to the pan and slide the potato cake back, the other way up. Cook steadily for another five minutes or until the underside of the rösti is crisp.
While the rösti is cooking grill the bacon for 5 minutes until crisp. Lay on kitchen paper to absorb excess fat and keep warm.

To poach an egg:
The key to a great poached egg is freshness. Fill a medium sized saucepan a third full with cold water and bring it to the boil. Add a pinch of salt and a dash of vinegar to the water and reduce to a simmer. Crack the eggs, one at a time into a cup and gently tip each into the simmering water. You can create a gentle whirlpool in the water to help the egg white set around the yolk. Set your timer and poach the eggs for 2 minutes for a soft and 4 minutes for a hard. Remove the poached eggs with a slotted spoon and drain on kitchen towels.
If you do not feel confident poaching eggs in a pan of boiling water, use an egg poacher. Butter the inside of the egg poacher and slide the eggs in. Cook the eggs for between 2 and 4 minutes.
Try this:
You can vary this recipe by:
 • Topping the rösti with a layer of wilted spinach and poached haddock
 • Serving the rösti  with a smoked salmon and scrambled egg


American Pumpkin Cranberry Bread

This quick break combines an American favorite, pumpkin, with a Massachusetts favorite, cranberries, from the Boston-based Neuroendocrine Tumor Research Foundation, a member of INCA. Modified from an original recipe by the American Institute for Cancer Research to reduce soluble fiber, this delicious treat is backed by science. Pumpkin is packed with potent beta-carotene and cranberries with anthocyanin. Both phytochemicals can act as antioxidants, helping prevent damage to cells.

Canola oil spray
1 cup unbleached all-purpose flour
1/2 cup ground flaxseed

2/3 cup packed light brown sugar
1 tsp. baking soda
1/2 tsp. salt
2 large eggs
1 cup canned pumpkin
1/4 cup canola oil
1/2 cup unsweetened applesauce
1/4 cup 100 percent apple juice
1/2 tsp. ground cinnamon
1/2 tsp. ground ginger
1/4 tsp. ground nutmeg
1 cup dried cranberries

How to prepare:

1.Preheat oven to 350 degrees. Lightly coat 8 x 4-inch loaf pan with canola oil spray and set aside.
2.In large bowl, combine flour, flaxseed, sugar, baking soda and salt and set aside. In medium bowl, lightly beat eggs. Whisk in pumpkin, canola oil, applesauce, apple juice, cinnamon, ginger, and nutmeg. Stir in dried cranberries. Add wet ingredients to dry ingredients, mixing until all dry ingredients are incorporated into batter. Do not beat or overmix. Pour batter into prepared pan.
3.Bake for 50-60 minutes, until wooden toothpick inserted into center comes out clean. Cool in pan on wire rack for 10 minutes. Remove bread from pan and continue cooling on rack. Once cool, wrap tightly in foil, let sit overnight (if possible) before serving.

Good to know:
Peeled pumpkin, squash, zucchini, and carrots are great vegetable options for those living with NETs who have symptoms. Cooked vegetables are easier to digest than raw.

Using white flour instead of wheat flour helps those with NETs reduce soluble fiber intake. Counter to many other nutritional guidelines - white flour, white bread, and white rice are best for the digestive systems of those with NET diarrhea or nausea.

On a general basis, those with gastrointestinal symptoms of NETs should avoid dried fruit. Instead aim for peeled fresh apple, pear, peach, nectarine, mango, or papaya.  Also, the sugar content of 100% fruit juice contains too much sugar for a NET survivor to have as a beverage. When drinking fruit juice always dilute it with water. But dried cranberries and apple juice used here in moderation for a special holiday recipe makes a quick bread that is easy to take to any gathering of friends and family and is one that you can partake in as well.


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