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INCA Monthly Newsletter - July 2016 News Update

4th INCA NET Patient Advocacy Summit in Plovdiv,
11-13 July 2016

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.

With some of the thought leaders in NETs from Europe, US, Australia and New Zealand joining us as speakers, the Summit agenda focuses on:

  • Understanding and addressing the information needs of NET patients
  • Collaborating with medical experts to advance research and elevate standards of care in NETs
  • Latest updates on the NET treatments and clinical trials from expert medical speakers

Plovdiv is the second largest city in Bulgaria and one of the oldest ones in the world with a history dating back 8 millenia, preserving antiquities from Thracian, Roman, Byzantine, Ottoman and Bulgarian Renaissance. It has been selected to be the European Capital of Culture 2019.

INCA 4th Summit is held at Landmark Creek hotel, right beside the Plovdiv rowing canal where the European Rowing Competition takes place at the same time.

Looking forward to an exciting  meeting!


INCA shares best practice in evidence-based activism
at the 2nd Masterclass in Cancer Patient Advocacy
held by European School of Oncology (ESO)


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. Targeted at highly experienced cancer patient advocacy leaders, the Masterclass aims to enhance their understanding of key cancer policy issues and develop their advocacy skills. Most of the cancer patient organisations active at a European or international level have sent delegates to the Masterclass, with 43 cancer patient advocates from 18 umbrella patient organisations in attendance. INCA was represented by Tore Aasbu, INCA Board Member and Teodora Kolarova, INCA Executive Director.

In addition to partaking in the intensive and insightful sessions, and the valuable networking opportunities, INCA also had the chance to share its best-practice experience in evidence-based activism during the Generating patient evidence: Learning from the experience of cancer patient advocacy groups module. Teodora showcased the success story of the Global NET Patient Survey - a collaborative effort between INCA and Novartis - in terms of strengthening the patient voice and engaging various key stakeholders to make an impact.


The manuscript 'Patient-Reported Burden of a Neuroendocrine Tumor (NET) Diagnosis: Results From the First Global Survey of Patients With NETs' published in the Journal of Global Oncology

The manuscript '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 study that attempts to characterize the impact of NETs from the patient perspective.


US Neuroendocrine Tumor Research Foundation Accelerates
Next Phase of NET Research

The Neuroendocrine Tumor Research Foundation (NETRF)  in USA has received a major gift from the Margie and Robert E. Petersen Foundation to expand its ambitious research effort to control and cure neuroendocrine cancers. Since receipt of this generous gift, NETRF has expanded its outreach to a global level, initiated new partnerships and alliances, and will soon launch a major RFP for innovative research to advance its cause.

With the funds provided by the Petersen Foundation, NETRF recently announced a new collaboration with the North American Neuroendocrine Tumor Society (NANETS) to fund a Basic/Translational Science Investigator Award.

As a result of an ongoing collaboration with the American Association for Cancer Research (AACR), NETRF also annually awards grants to investigators pursuing innovative ideas and approaches that have a direct application and relevance to neuroendocrine tumors.


“Cycling for Net” from France to UK

Apted with   IPSEN financial support, recently organized a bike circuit “Cycling for Net Patients” (Tous unis pour les Tumeurs NeuroEndocrines), with patients, families and friends (between 12 and 15 participants per day),  to raise awareness about  Net, zebra symbol,   and raise funds for research.

From Paris, they rallied Winchester (UK) where the whole group found Net Patient Foundation- UK for a reception at the Guildhall leaded by the Mayor of Winchester. Previously Professor John Ramage who had made the journey in the other direction last year, had joined the group for the last two steps. The weather was great and everybody enjoyed this activity and is now ready for the next event to imagine and organize. It was also an opportunity, a few days after Brexit, to demonstrate that together patient groups and healthcare professionals across Europe can build strong relationships and unwavering. Our collect is now 5 000 EUR. 


This year marks the 10th year of the NET Patient Foundation – UK

2016 marks the 10th year since the NET Patient Foundation first began to offer support to people affected by neuroendocrine cancer. In those 10 years the ethos and the reason for existence has not changed but the organisation has added to its remit especially in the research area. Since NET Patient Foundation created its clinical fund a couple of years ago, £250,000 has been spent on research into NETs.

Neuroendocrine Tumours (NETs) are a disease of vast complexity and there is much we have yet to learn. However, in recent years, understanding of the disease has improved markedly and significant technological advances have been made. This creates exciting opportunities to develop new diagnostics and therapeutics which will have a profound impact.

NET Patient Foundation's supporters give generously in the expectation that it will take advantage of these opportunities while continuing to deliver benefits for them in the short and long term.

The organisation will achieve this by supporting excellent research, as well as by influencing policy and empowering the public to ensure that the outputs of research are adopted. But there are various barriers to ensuring all NET patients get the best they deserve. These barriers form the basis of the organisation. We need to improve awareness, increase support structures, vastly improve healthcare education in this medical area, be strong voices for the patients affected and raise vital funds for research.


The Unicorn Foundation Australia invites specialists from around the globe to 4th Annual Theranostics World Congress

The organising committee, including The Unicorn Foundation Australia, warmly invite specialists from around the globe, to join them in Melbourne for the 4th Annual Theranostics World Congress from 7-9 November. The theme for 2016 is if you can see it, you can treat it and the purpose of this conference is to educate, promote and support the application and use of radio-labelled agents in the diagnosis and treatment of cancer. The disease focus will be neuroendocrine tumours and prostate cancer with exciting and innovative theranostic advances being presented from around the globe. Updates on somatostatin receptor imaging and Peptide Receptor Radionuclide Therapy (PRRT) of neuroendocrine tumours and PSMA imaging and therapy of prostate cancer will be of particular interest to clinicians working with these diseases. Early bird registrations close soon


CNETS Canada expanded patient support across the country

CNETS Canada continues to expand patient support across the country.  Feedback from our patient community indicated the importance of our website and support groups as their main sources of information and support. In 2016, we launched our new website and are expanding support across the country. Live one-on-one support is provided by CNETS Canada’s patient coordinator.   In addition, there are eleven active support group contacts or in-person groups across the country with up to five new support groups planned for 2016.  To increase access, we also started two online closed Facebook support groups. The first, Canadian Carcinoid NeuroEndocrine Zebras, signed up 149 members in two months. The second group provides emotional support to caregivers only.

Training and resources for support group leaders is key. We have just completed a handbook for support group leaders and will offer a second training session in April 2017 in conjunction with our national conference.


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