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$10 Million Funding for Rare Cancers

This week Greg Hunt MP announced a further $10 million for funding rare cancers including a Merkel Cell Carcinoma Clinical Trial through the Medical Research Future Fund. Australia has the highest incidence of this rare neuroendocrine skin cancer in the world, so we are happy to see much needed funding for clinical trials from the…

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AMEND Is Working With ENDO ERN to Improve Access to Gold Standard Treatment

AMEND is working with the European Reference Network for Rare Endocrine Conditions (ENDO ERN) to help widen access to gold standard treatment throughout Europe.  During the European Society for Paediatric Endocrinology (ESPE) conference in Athens, AMEND CEO, Jo Grey was invited to speak in the ENDO ERN Symposium on Paediatric Pituitary Tumours in MEN1.  These…

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CNETS Canada: 2018 NET Research Grant Call For Applications

CNETS Canada is committed to improving the quality of life and survival for NET patients across Canada. To deliver on this vision, CNETS Canada has been supporting NET-research since 2011, initially through a partnership-based approach and since 2016 through its independent Research Funding Framework. This is the third year in which CNETS Canada are offering…

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Finding Love and Neuroendocrine Cancer

"Finding Love and Neuroendocrine Cancer" is the next video in Carcinoid Cancer Foundation’s 50th anniversary series. Shock was Dana’s first reaction when she was diagnosed at age 31 with neuroendocrine tumors throughout her body. Her boyfriend couldn’t cope with her diagnosis and Dana found herself alone, her world turned upside down. And then came Brien...…

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NET Patient Foundation Launches Facebook Live Program

The NET Patient foundation currently has over 30 face to face NET Natter local support groups running across the UK, but face to face is not for everyone, so in the summer, utilising already established platforms, the NPF launched its NET Natter online support groups. One is dedicated to the supporters of NET Patients, ‘Next2NETs’,…

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Patients in the Focus of ECCO Cancer Summit 2018

The ECCO 2018 European Cancer Summit, was held on 7-9 September 2018 in Vienna, Austria bringing worldwide leaders from the cancer healthcare, patient advocacy and stakeholder communities together in a unique multidisciplinary forum. Connecting science with real life by driving policy evolution at the highest political level, the Summit debated leading-edge ideas on outcomes research,…

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NETRF Immunotherapy Update

Immunotherapy has been called one of the most significant advances in cancer in decades. While this approach may work in some cancers, it is unclear if or how immunotherapy can be used in NETs. The Neuroendocrine Tumor Research Foundation (NETRF) has been leading an effort to understand the potential of immunotherapy in NETs. And now…

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INCA Experience Shared as Best Practice Across the Patient Advocacy Community

INCA Executive Director Teodora Kolarova presented the INCA Unmet Needs initiative and its impact on evidence-based advocacy at the 2nd international conference for organizations representing people with chronic lymphocytic leukemia (CLL) - CLL Horizons & the 3rd international conference for organizations representing people with myeloproliferative neoplasms (MPN) - MPN Horizons in Prague on September 2nd.…

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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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