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NET Patient Foundation: Walk for NETs

It is a constant challenge for all patient organisations to raise funds to keep their services running, and one of the NPF's campaigns is Walk for NETs - raising funds and awareness! It is open to anyone and can be done anytime between June and September, anywhere in the UK. A gentle stroll with the…

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AMEND Launches UK Regional Volunteers Project

AMEND’s 8 new Regional Volunteers are all trained and beginning to set up their regional meetings for members of AMEND’s community around the UK.  Areas in the UK currently covered include, Essex, Suffolk, Tyne and Wear, Birmingham, Leicestershire, Warwickshire and the South West.  AMEND's Volunteers include, an ACC patient, a mother of a child with…

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Registration for Unicorn Foundation New Zealand Annual NET Cancer Patient Education Day Is Open

The Unicorn Foundation New Zealand will hold its annual NET Cancer Patient Education Day on Saturday 22nd Sept, from 10am to 5pm at AUT City Campus, Room WG308, 55 Wellesley Street, Auckland City. The Unicorn Foundation New Zealand is excited to be bringing you international speakers and loads of practical information for all NET patients…

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Where the Heart Is

CCF’s 50th anniversary video series continues with “Where the Heart Is.”  It was 2004 and Pat and Chuck were preparing to move to a new home – life was good, personally and professionally. Then Pat suddenly developed what the doctor thought was bronchitis. When she went into heart failure they discovered a neuroendocrine tumor on…

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NET Research Foundation Funds Study to Look for Predictive Biomarker

It is hard for doctors to know which patients will respond to which therapies. New approaches in personalized medicine use predictive “biomarkers” to help guide treatment decisions. A biomarker is a molecule found in blood, body fluid, or tissue. Research sometimes shows that people with a certain biomarker are more likely to respond to treatment…

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The World Lost Aretha Franklin to NETs

The Queen of Soul, Aretha Franklin sadly died of neuroendocrine cancer (NETs) of the pancreas, the very same cancer that killed Apple founder Steve Jobs and takes the life of thousands of people each year. Neuroendocrine cancer is a type of cancer that is very different to the more common pancreatic cancer. As announced in…

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INCA Unmet Needs in NETs Initiative Results to be Presented at Key Medical Conferences around the World

Two of the INCA abstracts based on the findings of the Unmet Needs in the Global NET Community Initiative have been accepted for poster presentation: - "Unmet needs in the global NETs patient community from the perspectives of patients, patient advocates and NET health professionals" - at the upcoming 2018 NANETS Annual Multidisciplinary NET Disease…

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CNETS Canada NET Research Priorities Survey Results

In March CNETS Canada reached out to the patient community through an online, anonymous survey to gather feedback and input on setting the research priorities for CNETS Canada sponsored grants for the next 2-3 years. 187 responses from across Canada were received with 75% of the replies from patients. One of the most significant findings…

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NETRF Works to Take PRRT to Next Level

The Neuroendocrine Tumor Research Foundation (NETRF) has invested more than $1.5 million in advancing a precision form of radiation therapy for NETs called Peptide Receptor Radionuclide Therapy (PRRT). Improving efficacy and safety Three NETRF-funded studies are looking at how existing approaches to PRRT can be improved to: Expand the number of patients able to benefit from PRRT…

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AMEND Raises Almost £15,000 During Yorkshire Three Peaks Challenge

On the weekend of 30 June, a 13-strong team climbed three famous English mountains (Pen-y-Ghent, Ingleborough and Whernside) in the stunning scenery of the Yorkshire Dales to raise money for AMEND.  With exceptional weather in England this summer, the team, including several patients, had to deal with temperatures of up to 32 degrees celsius and…

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