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The NET Platform members call for more action on NETs

The NET Platform is the coalition of physicians, researchers, patient representatives, nurse specialists
and industries working to address the needs of the NET community.

 

The NET Platform members call for more action on Neuroendocrine Tumours (NETs)

Neuroendocrine tumours (NETs) are an increasingly common, yet poorly understood form of cancer. Given the benign or non-specific symptoms of the disease, patients are often misdiagnosed for many years. The result is that by the time the correct diagnosis is in place, life expectancy is drastically reduced.

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Why the Zebra?

  Why is the zebra associated with NET Cancer? In medicine, the term “zebra” is used in reference to a rare disease or condition, like Neuroendocrine (NET) Cancers. – Medical students are thought to assume that the simplest explanation is usually the best, i.e., it is usually correct to look for common rather than exotic causes…

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NET Cancer webinar series

NET Cancer specialist at Asia Pacific Neuroendocrine Tumor Society (APNETS) conference 2016.

Webinar Series with NET Cancer specialists

 A series of webinars from NET Cancer specialist. Produced by CNETS SG at Asia Pacific Neuroendocrine Tumor Society (APNETS) conference. Many of the talks are of particularly interest to NET Cancer advocates, and also to patients and caregivers.  View presentations from; Marianne Pavel, Rodney Hicks, Sugandha Dureja, Frank Ulrich Pape, David Tai, Kjell Oberg and many more. 

Find more from the CNETS Ipsen Webinar Series at https://itr8.wistia.com/projects/4eujigyhr0

Thanks to Carcinoid & Neuroendocrine Tumor Society of Singapore, CNETS SG, for sharing and producing the webinar. Also thanks to Ipsen Pharma for their support creating these videos.

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Policy recommendations NETs

 

The challenges of NETs, – Knowledge in diagnosis, Patient journey, Research and Innovation.

Policy Recommendations on Neuroendocrine Tumors

To address the numerous challenges in the management of rare cancers such as neuroendocrine tumours (NETs), NET patient representatives from INCA and its member organizations and leading healthcare professionals (The NET Platform), met with policy makers in the European Parliament on 10 November 2015.

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Let’s Talk About NETs

Unfortunately in the crowded space of health promotion amongst not for profits and patient groups, less common cancers such as NET Cancer (neuroendocrine cancer) do not get the attention that they deserve and need.

Let’s Talk About NETs” this World NET Cancer Day Nov 10.

 

This year we propose that we simplify our complicated message and with the help of our patients and supporters around the country (and around the globe) spread the news through “Let’s Talk About NETs”.

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4th INCA NET Patient Advocacy Summit

For a fourth time since 2012 INCA brings together NET patient advocate leaders from around the globe to learn about the latest treatment developments and research, as well as share best practices and build common platforms.

4th INCA NET Patient Advocacy Summit in Plovdiv (Bulgaria), 11-13 July 2016.

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ESO Masterclass in Cancer Patient Advocacy

INCA has had the pleasure of participating in the 2nd Masterclass in Cancer Patient Advocacy: Working Towards Stronger and More Effective Advocacy in Europe, taking place on 24-26 June in Milan, Italy.

 

INCA shares best practice

Evidence-based activism at the 2nd Masterclass in Cancer Patient Advocacy held by European School of Oncology (ESO)

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First Global Neuroendocrine Tumor Patient Survey Results Published in Journal of Global Oncology

  “Patient-Reported Burden of a Neuroendocrine Tumor (NET) Diagnosis: Results From the First Global Survey of Patients With NETs” - a collaborative effort between the International Neuroendocrine Cancer Alliance (INCA) and Novartis, was published in the Journal of Global Oncology. The Global NET Patient Survey is the first large, global initiative that attempts to characterize…

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Cycling for Net

Our Cycling Team will  leave Paris on 24 June, to arrive in Winchester on 28 June.  Professor Ramage will join our team, composed mainly of patients and carers, and he will accompany them to Winchester. In May 2015, members of our Association APTED (Association de Patients porteurs de Tumeurs Endocrines Diverses) met in Paris to…

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INCA support the NET Cancer community in UK

  INCA Strongly Supports the NET Community in the UK in its efforts to access to PRRT INCA strongly supports the neuroendocrine (NET) cancer community in the United Kingdom in its efforts to alleviate the devastating side effect of removing an outstanding, life changing treatment, Peptide Receptor Radionuclide Therapy (PRRT) Lutetium-177 DOTA Octreotate, for patients with progressive, inoperable neuroendocrine…

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