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INCA Member in Focus: The Neuroendocrine Tumor Research Foundation (NETRF), USA

Every month INCA presents one of its members via an interview with the founders and governance. This month we are glad to present The Neuroendocrine Tumor Research Foundation (NETRF), USA by interviewing Ron Hollander who is is the Executive Director of the organization. When was the organization founded and how? We were founded in 2005 as the Caring…

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PriMeMasterclass in NETs, NET Cancer Day
INCA on Meaningful Patient Advocacy – at a prIME Masterclass in NETs on NET Cancer Day

Teodora Kolarova, INCA Executive Director was invited to speak about Meaningful Patient Advocacy at the prIME Masterclass in Neuroendocrine Tumours to be held on 10-11 November in Amsterdam, the Netherlands (venue: De Koepelkerk at the Renaissance Amsterdam Hotel). The Masterclass, co-chaired by Dermot O’Toole and Philippe Ruszniewski, will engage experts in the field of neuroendocrine…

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SiobhanConroy, Unicorn Foundation New Zealand
Unicorn Foundation New Zealand campaigns for government funding of PRRT for NET patients

Unicorn Foundation New Zealand and eight more cancer local organizations presented a manifesto to the Minister of Health, politicians and their health advisors in a campaign to encourage all political parties to work with the NGOS to help Kiwis receive improved cancer care, funding and access to treatment no matter where one lives in New…

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CNETS India
CNETS India informs Alpha PRRT is now available for NET patients in India

CNETS India team is happy to share that two nuclear medicine centres in India have started Alpha PRRT for NET patients.  World over, many clinical trials have established the benefit of PRRT for metastatic NETs. Alpha PRRT uses the more powerful alpha particle emitting agents, Actinium 225 or Bismuth 213, in place of Lutetium 177…

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CNETS Canada research grants
CNETS Canada announces 2017 NET Research Grant recipients

The CNETS Canada Neuroendocrine Tumour Research Grant provides each calendar year grant-in-aid for two projects up to a maximum of $40,000 per project. The NET research funding priorities were determined through consultation with the NET patient community, and input from CNETS Canada’s Scientific and Medical Advisory Board (SMAB). To be eligible for the 2017 NET…

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NET Research Foundation nutrition tips
Nutrition tips for NET patients from NET Research Foundation conference

What, when, and how you eat can help to improve your response to cancer treatment and help ease burdensome symptoms and side effects - according to University of California, San Francisco, U.S., Dietitian Greta Macaire, MA, RD, CSO, consuming the proper nutrients can mean fewer complications, faster recovery, and improved strength and energy.  She presented…

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Unicorn Foundation Australia
INCA Member in Focus: The Unicorn Foundation Australia

Every month INCA presents one of its members via an interview with the founders and governance. This month we are glad to present Unicorn Foundation Australia by interviewing Simone Leyden who is is the CEO and Co-Founder of the organization. When was the organization founded and how? The Unicorn Foundation was formed in late 2009 and…

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Pheo Para Troopers
Pheo Para Troopers, USA, invite pheo/para patients for pre-screening for inclusion in clinical trial

In the end of July 2017, Pheo Para Troppers, USA, announced a clinical research group at Yale Medical School anticipates beginning a clinical trial in the near future with pheo/para patients to test a drug already approved for use in multiple types of cancer for efficacy in our patient population. If patients are interested in…

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Unicorn Foundation Australia grant
Australian Federal Health Department supports patients living with NET by a grant to Unicorn Foundation

In the end of July 2017, Australian Federal Health Minister Greg Hunt presented the Unicorn Foundation co-founder and CEO Simone Leyden with a grant to build the resources for support and education for patients and medical community. The event included a morning tea with NET cancer patients to discuss and recognize the need for greater…

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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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