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NET Patient Foundation Reports Success in Treatment Availability in UK

For a couple of years now, the UK has struggled with NET treatments being unavailable, due to lack of NHS approval. The NPF is however delighted with the three positive outcomes it has received this month. Patients, healthcare professionals and industry groups have been working so hard to bring us back to a service where…

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CCF’s 50th Anniversary Video Series Continues With “Laughter Is the Best Medicine.”

Steve Mazan has known since he was a kid that he wanted to make people laugh. A diagnosis of neuroendocrine cancer in 2005 made this stand-up comedian and inspirational speaker more determined than ever to realize his dream of being on the David Letterman show. He was told he had 5 years to live; 13…

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Unicorn Foundation Successfully Receives Two Grants

The Unicorn Foundation has received two grants recently, $70,000 to support the provision of their Nurse support service and $200,000 to an application to support the CONTROL NETs study. Here is an update from Principal Investigator, A/Prof Nick Pavlakis: Great news was received with the award of a $200,000 grant from Tour de Cure to…

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Further Reach of INCA Unmet Needs Initiative

Given the scope of the initiative, which offers huge potential for further reach, INCA Survey on Unmet Needs in the Global NET Community generated a number of abstracts, submitted to the major cancer congresses taking place by the end of the year, including ESMO, NANETS and APNETS. Bringing the findings of this research closer to…

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NET Patient Foundation Launches Packs for New Patients

The NET Patient Foundation is pleased to announce that its pack for new patients is now available. NPF provides this pack to hospitals across the UK to ensure every new patient receives useful and straightforward information created just for them. It contains a USB wristband which includes informative videos and a comprehensive guide to life…

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AMEND to Hold First Annual Training Day for Regional Volunteers

On Friday, 13th July AMEND will hold its first annual training day for 7 new regional volunteers who were recruited within 48 hours of the call going out earlier this year.  Their roles will include developing regional groups around the UK for peer support of all those affected by multiple endocrine neoplasia, succinate dehydrogenase disorders…

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CCF’s Latest Anniversary Video Tells a Wonderful Story of Friendship

CCF’s 50th anniversary video series continues with “Fate and Friendship.” When Xochi and Ellen met little did they know they would form a unique bond. Together, these awesome friends have held each other up, provided comfort during difficult times, and navigated next steps in the journey of living with neuroendocrine cancer. This video is part…

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Pheo Para Alliance Celebrates Merger with Pheo Para Troopers at its 9th Annual Gala

Bethesda, MD – “Stronger United” was the theme of the Pheo Para Alliance’s 9th annual gala in May celebrating its recent merger with the Pheo Para Troopers and raising over $70,000 to advance its mission to support pheochromocytoma and paraganglioma (Pheo Para) patients through research and advocacy. Prior to the merger, the Pheo Para Alliance…

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NETRF Seed Funding Helps Grow the Field

Two NETRF-funded researchers received Career Development Awards at the 2018 annual meeting of the American Society of Clinical Oncology (ASCO), one of the largest and most respected gatherings of physicians in the field of oncology. The awards, offered by ASCO’s Conquer Cancer Foundation, fund three years of research on patient-focused topics. Award Winners: Daniel Halperin,…

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Team Zebra Ottawa Raises $13,000 for NET Cancer Research

Congratulations to the amazing Team Zebra Ottawa, who participated at the Tamarack Ottawa Race Weekend, raising $13,000 for NET cancer research in Canada! Thank you to the members of the team: Natalie Mezey (Team Captain), Hunter Fox, Bryde Fresque, Catharine Young, Ken Young, Alisha Bailey, Stephanie Goubau, Claire MacArthur and a very special thank you…

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