Raising awareness of neuroendocrine cancers around the world

Unicorn Foundation Team Participates in Melbourne, Australia Marathon

The Unicorn Foundation will send a team of about 100 runners to participate in the Melbourne Marathon on Sunday, October 9th. Team members can choose from 5km, 10km, half or full marathon courses. Read rest of article.

Carpa Organizes Meetings Focusing on NET Patients

Carpa, the Swedish NET patient organization, has organized two special meetings that will be held in conjunction with the European Multidisciplinary Cancer Congress in Stockholm this September. Read rest of article.

Afinitor and Pancreatic NET Patients in the EU

Pancreatic NET patients in the EU with unresectable or metastatic tumors may soon have the first mTOR inhibitor drug to be approved for pNET patients. The Committee for Medicinal Products for Human Use (CHMP) of the European Medicines Agency has backed Novartis’ Afinitor. The European Commission is expected to follow the CHMP recommendation and will deliver its final decision within the next three months.

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New Pancreatic Neuroendocrine Tumor Website

Pfizer Oncology, in partnership with the Pancreatic Cancer Action Network, has created a new website dedicated to helping foster stronger connections throughout the pancreatic NET (neuroendocrine tumor) community and to raising awareness through education and information.  The site includes excellent videos of patients and caregivers talking about their experience with pancreatic NETs.  Visit the site at:  http://www.pannetconnections.com.

European NET Nurse Forum Goes Live

The NET Patient Foundation has announced the launch of the European NET Nurse Forum, which went live on June 29, 2011.

The NET Nurse Forum Europe has been developed to improve the communication between specialist and nonspecialist nurses working with NET patients. Across Europe there is a wealth of expertise and energy among nurses and this forum provides a tool for sharing, supporting and guiding each other, for the ultimate benefit of NET patients.

Nurses who are interested in joining the forum should contact Catherine Bouvier, Director of the NET Patient Foundation:  catherinebouvier@btinternet.com.

1st World Congress on Gallium-68 and Peptide Receptor Radionuclide Therapy (PRRNT)

Since 1997, when he first used the radiolabeled peptide Y-90 DOTATOC (a somatostatin analogue) to treat a 15-year-old boy with a rare neuroendocrine tumor, called paraganglioma, and saw the boy go from being wheelchair-bound and in terrible pain to a young man of 20 who was walking and playing soccer, Prof. Dr. Richard P. Baum has been passionate about Peptide Receptor Radionuclide Therapy (PRRNT).

To share his enthusiasm and knowledge with physicians and scientists throughout the world, Dr. Baum and his colleague from Mainz, Prof. Dr. sc. nat. Frank Rösch, have created the 1st World Congress on Ga-68 and Peptide Receptor Radionuclide Therapy.  This Congress, co-organized by the Department of Nuclear Medicine/PET Center, Zentralklinik Bad Berka and the Institute of Nuclear Chemistry, Johannes Gutenberg University, Mainz will be held June 23 – 26, 2011 in Bad Berka, Germany.  Read More

Australian Radio Broadcast Focuses on NET Cancer

A special radio broadcast today on neuroendocrine tumors from Radio National, Australian Broadcasting Corporation’s national radio network, features Dr. John Leyden, Chairman of the Unicorn Foundation in Sydney, and a NET patient. A transcript of the program will also be available. Click on Download Audio to listen to the 10 minute broadcast.  This broadcast brings about greater awareness of NET cancers with excellent information about symptoms and treatments as well as the conditions which are frequent misdiagnoses for NET cancers, such as irritable bowel syndrome (IBS).

Taiwan Launches First Chinese NET Website

Hope Society for Cancer Care in Taiwan has launched the first Chinese NET website.  Featured on the site is Prince Star, a renowned Taiwanese astrologer, who is also a NET cancer survivor.  Diagnosed in 2006 he spent 10 days in a coma and in order to save his life, surgeons amputated his left leg.  In the YouTube video on the website, Prince Star talks about his treatment and experience with NET cancer.  His mission now is to help bring about greater awareness of NETs.  Visit the website at http://www.net.org.tw.

NET Cancer Survivor Featured in UK Daily Mail

Peter Stothard, a pancreatic NET survivor, is featured in an article in the UK Daily Mail.  Mr. Stothard, a patron of the NET Patient Foundation and author of On The Spartacus Road, A Spectacular Journey through Ancient Italy, reflects on a new book entitled The Cancer Survivor’s Companion and his experience as a cancer survivor.  READ MORE

News from Australia about PRRT

The Unicorn Foundation in Australia has received over 1,500 signatures for the State Government to provide funding for PRRT in New South Wales. The Hon Andrew Stoner presented the petition to Hon Jillian Skinner. This is a significant step for New South Wales NET cancer patients.