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Tag: INCA

Ipsen-INCA Patient dialogue
INCA discusses critical issues for the patient community at IPSEN’s Dialogue for Patient Care

On March 13, 2017 INCA took part in a meeting with Ipsen CEO David Meek, who invited three patient advocates from the United States and Europe to discuss such critical issues as patient empowerment, patient-centered research, involving patients in the drug development process, access to innovative drugs and the role of real-world data. The meeting…

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WECAN meeting, July 2017, Milan
INCA joins pan-European patient leaders for a WECAN strategy meeting in Milan

The leaders of pan-European cancer patient networks, the "Workgroup of European Cancer patient Advocacy Networks (WECAN), met in Milan for a 2-day strategy retreat on 11 – 12 July 2017 in Milan, Italy.  These were two very productive days with the leaders of 15 pan-European cancer patient organizations. INCA is a member organization and was…

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INCA summit barcelona header
5th INCA NET Patient Advocacy Summit

 

For a fifth 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. This year, for the first time INCA (International Neuroendocrine Cancer Alliance) and ENETs held a joint symposium between NET physicians and patient advocates from around the world, at the ENETS conference in Barcelona.

 

5th INCA NET Patient Advocacy Summit

Barcelona 8-10 March 2017

 

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inca header NET Pat UK
NET Patient Foundation-UK Data Project 2017

Due to a lack of ICD-10 codes for neuroendocrine cancers, it has been difficult for NET Patient Foundation – UK, INCA member organization, to extract data about NET patients from the NHS cancer registry. It is crucial that we are able to obtain data about NET cancers from the cancer registry in order to be…

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CNETSCanada-Sonya Carrie-2
CNETS Canada National NET Patient Conference (Videos)

In April 2017, CNETS Canada, INCA member organization, hosted a national NET Patient Conference in partnership with the Canadian Association of Nuclear Medicine (CANM). The conference theme was “A Time of HOPE” and showcased the latest diagnostics and treatments, with presentations from Canada’s top multidisciplinary NET specialists and two international experts. The event was a…

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CNETS India
CNETS India to expand reaching patients with partner Indian Cancer Society

CNETS India, INCA member organization, is planning collaboration with Indian Cancer Society, a nonprofit organisation working for cancer awareness and supporting patients in India, for promoting NET cancer awareness. CNETS India team shall be educating their cancer support volunteers about Neuroendocrine Cancers and partner with them to reach out to more and more patients at…

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NET Patient Foundation UK
NET Patient Foundation UK launches NET Handbook

NET Patient Foundation announced its new NET Handbook, which is a guide covering all aspects of living with NETs. The book is being sent out to hospitals to be given to all newly diagnosed NET patients. It is also available to purchase as a donation to the foundation on the organization’s website. The Handbook will…

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AMEND UK
Free booklet on issues of employment and returning to work with MEN from AMEND-UK

In a 2016 AMEND-UK, INCA member organization, made a member survey where just over half of people told that their work or career had been impacted in a negative way as a direct result of having multiple endocrine neoplasia, or a related condition. In May 2017 AMEND published a new booklet “Employment & Returning to Work”…

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NETRF
Presentations and videos from educational conference for patients in USA

The 6th Annual Focus on Neuroendocrine Tumors is a free, educational conference for patients, family members, and caregivers who are newly diagnosed, currently in treatment, or long-term survivors of neuroendocrine tumors. This year’s event was held on 5 May 2017 in Philadelphia, Pennsylvania on the University of Pennsylvania campus and was presented by Penn Medicine…

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inca header Unicorn project
Unicorn Foundation invites NET patients to participate in Defining NETs research

It’s been nearly twelve months since the “Defining NETs” research project of Unicorn Foundation - Australia, INCA member organization, started and while some valuable data has been collected so far, it is still behind the anticipated targets in recruitment. So far patients from Peter Mac, Royal North Shore and Lyell McEwin Hospital are assisting with…

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