The NETwork

What is a Somatostatinoma?

First clinically described in 1977, a
Somatostatinoma is the rarest type of Pancreatic Neuroendocrine Tumour, with an incidence of 1 in 40 Million.

Read more :

https://www.orpha.net/en/disease/detail/97283

https://knowledge.rarecancers.org.au/knowledgebase/cancer-types/289/somatostatinoma-pnets

https://www.uptodate.com/contents/somatostatinoma-clinical-manifestations-diagnosis-and-management #:~:text=Somatostatinomas%20are%20rare%20neuroendocrine%20tumors%20with%20an%20annual%20incidence,in%2040%20million%20%5B2%5D.

📣Today is ! Around 300 million people worldwide, 5% of the global population, are on this journey with you! We are stronger together in sharing our messages!
👉Neuroendocrine cancer is an uncommon disease, often camouflaged behind common symptoms.
It is difficult for healthcare professionals to make a correct diagnosis if they are not aware of NETs.
🦓Let‘s help the clinicians to get information and mind the zebra!
✔Download and share with the doctors you know our multilingual library with 26 factsheets on different types of NETs – available in the following 11 languages: Arabic, Chinese, English, French, German, Hindi, Italian, Japanese, Portuguese, Russian and Spanish: https://incalliance.org/net-info-packs/

🦚 Happy Rare Disease Day 🦓

Self-care is a priority. Nourish yourself today!

🎉 The countdown is officially ON! Just one week until we kick off March4NETs! 👟

Get ready to lace up, gear up, and make every step count this March!

Join us for the inaugural March4NETs event where every dollar raised fuels our mission to enhance patient support and drive better outcomes for NET patients. 🏃‍♂️

Whether you walk, run, or ride, every stride you take - be it 30km, 50km, or 100km - makes an impact.

🤝 Register as an individual or team now - https://fundraise.neuroendocrine.org.au/event/march-4-nets

Patient GFM, please consider donating or sharing the link, thank you 🙏

Life's Expenses, Rare Cancer, for James M. Tobin, organized by Jimmy Tobin February 12, 2024, This is Jimmy Tobin. For all who know me, you all hav… Jimmy Tobin needs your support for Life's Expenses, Rare Cancer, for James M. Tobin

We're so excited to announce that registration is open for our April 13th NET Patient conference in Coralville, IA!

Doctor Lineup Will Be Announced this !

https://lp.constantcontactpages.com/ev/reg/d9v9hzf/lp/580a074a-3cba-49d5-a1f7-c5a7b2534b69

Self care can be.....

Today's number: 4

ONLY 3 DAYS LEFT until our February 17th NET Patient conference in San Diego, CA!

https://www.netcancerawareness.org/event/ncan-2024-san-diego-net-patient-conference/?instance_id=243

LUNCHEON WITH THE EXPERTS RETURNS!

These feelings are valid, and you are not alone 🖤

Pheo Para Alliance is headed to Washington, DC on February 25th for Rare Disease Week on Capitol Hill! Can you join us? Follow the link below for information on what we're doing and how to register to meet us on the Hill!

https://bit.ly/3U3NlPk

We're so excited to announce that registration is open for our February 17th NET Patient conference in San Diego, CA!

Dr. Demeure and 4 other incredible doctors presenting and sharing vital information on NETs! You are not going to want to miss this!

https://www.netcancerawareness.org/event/ncan-2024-san-diego-net-patient-conference/?instance_id=243

https://www.instagram.com/reel/CzuntflNGaK/?igsh=MW1wbmIybHhtaGV1Yg==

I’m proud of you. Send this to someone you’re proud of. #positiveaffirmations #proud #compliments #metalhead

👉Patients expect more research to be done for neuroendocrine cancer.
NET clinical trials are the way to advance treatments and consider quality of life of patients on their journey.
✔Get a snapshot of the global map of NET clinical trials with this innovative trial finder that will consider the specifics of your condition and your location: https://incalliance.org/find-a-trial/
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🔹Collaboration between NET patient and NET medical expert communities provides valuable patient-centered information.
🟣If you have missed the European Neuroendocrine Tumor Society e.V. - ENETS /INCA NET Cancer Day Educational Webinar, now you can watch it at your convenience: https://incalliance.org/enets-inca-webinar-recording-2023/
It will give you the latest on diagnosis and treatments of NETs, enriched with specific patient experience.

📣A new captivating NET informational video is now available from CNETS Singapore.
It provides easy-to-understand basic information on the disease and guide how to get support from the patient organization blending consistently the messaging from two NET specialists and helpful information from William Claxton, President of CNETS Singapore.
✅Read more and watch the video: https://incalliance.org/cnets-singapore-info-video/

Happy New Year to all NETs community across the globe! Thank you to all our admin for their volunteer work and to all our group members contributing throughout the year supporting one another. Where would we be without our NET-work?! Wishing everyone a safe & happy new year and goodbye 2023!!

🟩Carcinoid syndrome usually occurs with NETs found in the small bowel/intestine but can also occur in other types of NETs: lung, pancreatic, ovarian, or unknown origin NETs. Serotonin, together with other bioactive substances, can affect the right side of the heart inducing changes known as carcinoid heart disease.
✅Download the European Neuroendocrine Tumor Society e.V. - ENETS patient leaflet with a snapshot of carcinoid heart disease from the INCA website: https://incalliance.org/associated-conditions/