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A message from Simone Leyden CEO and Co-Founder of the Unicorn Foundation and President of the International Neuroendocrine Cancer Alliance (INCA).
The Unicorn Foundation is the only Australian not-for-profit medical charity focused on neuroendocrine tumours (NET).
Neuroendocrine tumours (NET) by nature are less common; manifest myriad clinical symptoms, many of which are non-specific, and are usually diagnosed late in their clinical course. Such behaviour has created a culture of misunderstanding and non-treatment by physicians. As a result, many patients have felt neglected and abandoned by a medical system that is only beginning to understand and grasp the complexities of the patient with neuroendocrine tumours.
This has been the experience that we have shared with our sister Kate; wife to Nick and friend to many. The journey that she endured since being diagnosed with metastatic pancreatic neuroendocrine carcinoma in 2005 has been the inspiration behind the formation of the Unicorn Foundation.
Formed in 2009 we have the mission to improve awareness of neuroendocrine tumours within the medical profession and the general public; foster patient understanding through support groups and raise much needed funding for Australian research in this area.
Fortunately, the Australian medical landscape is changing with regards to neuroendocrine tumours with many physicians (Oncologists, Endocrinologists, Gastroenterologists, Radiation Oncologists), Surgeons, Radiologists and Nuclear medicine physicians gaining experience and knowledge. We hope we can work closely, on behalf of neuroendocrine tumour patients and their families with the medical community to achieve our mission.