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Pheo Para Troopers
Pheo Para Troopers, USA, invite pheo/para patients for pre-screening for inclusion in clinical trial

In the end of July 2017, Pheo Para Troppers, USA, announced a clinical research group at Yale Medical School anticipates beginning a clinical trial in the near future with pheo/para patients to test a drug already approved for use in multiple types of cancer for efficacy in our patient population. If patients are interested in…

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Unicorn Foundation Australia grant
Australian Federal Health Department supports patients living with NET by a grant to Unicorn Foundation

In the end of July 2017, Australian Federal Health Minister Greg Hunt presented the Unicorn Foundation co-founder and CEO Simone Leyden with a grant to build the resources for support and education for patients and medical community. The event included a morning tea with NET cancer patients to discuss and recognize the need for greater…

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Ipsen-INCA Patient dialogue
INCA discusses critical issues for the patient community at IPSEN’s Dialogue for Patient Care

On March 13, 2017 INCA took part in a meeting with Ipsen CEO David Meek, who invited three patient advocates from the United States and Europe to discuss such critical issues as patient empowerment, patient-centered research, involving patients in the drug development process, access to innovative drugs and the role of real-world data. The meeting…

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NET Patient Foundation 10 years anniversary
NET Patient Foundation launches the first NET retreat for 10-year anniversary

After 10 years of the NET Patient Foundation UK and having received the most amazing support from the NET community, the team wanted to give a little back to those who have to live with this disease and its unpredictable and complex nature. NET Patient Foundation teamed up with Penny Brohn Cancer Care and hired…

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PANCANJapan
NPO PanCAN Japan succeeds in boosting legislative change for cancer research support

NPO PanCAN Japan has worked with other cancer support organizations last year to lobby Ministry of Health, Labour and Welfare (MHLW), congressmen and senators to amend Cancer Control Act of 2006. Revised Cancer Control Act was finally passed last December and we were very happy and proud to learn that the revision now has a…

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NET&MEN kanker België
Second NET CoE and first lustrum for the NET&MEN Cancer Association in Belgium

Since March 2017, Belgium now has a second Center of Excellence, reported NET&MEN kanker België vzw, the Belgian association for NET and MEN patients. After the university hospital of Leuven, now also the University Hospital of Antwerp has been rewarded with this honor. The CoE status is accredited by ENETS to medical centers complying to…

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AMEND National Research Registry
AMEND UK: First UK National Research Registry For MEN1 & Pancreatic Neuroendocrine Tumours In Sight

AMEND, UK, has been working with a team of specialists and specialist centres, led by AMEND Patron, Professor Raj Thakker from Oxford, in developing a new National Research Registry for MEN1 and pancreatic neuroendocrine tumours (pNETs). The Registry is now in its final stages of development and aims to enable researchers to look more closely…

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NET Patient Foundation team
The NET Patient Foundation UK expands community support team

It has been a delight to be able to expand NET Patient Foundation, UK, band of 1 nurse to a band of 2 this summer. A specialist nuclear medicine/NET nurse, Lindsey Devlin has joined our team to help support patients in the community alongside Nikie Jervis. We have around 30 support groups set up in…

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Carcinoid Cancer Foundation guide
Guide to Understanding Carcinoid Syndrome from Carcinoid Cancer Foundation, USA

Know the signs and symptoms — skin flushing, diarrhea, heart racing . . . it could be carcinoid syndrome! How is it diagnosed, what are the treatment options, what questions should you ask your healthcare provider? Read more in this new publication, Guide to Understanding Carcinoid Syndrome, from Health Monitor and the Carcinoid Cancer Foundation,…

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WECAN meeting, July 2017, Milan
INCA joins pan-European patient leaders for a WECAN strategy meeting in Milan

The leaders of pan-European cancer patient networks, the "Workgroup of European Cancer patient Advocacy Networks (WECAN), met in Milan for a 2-day strategy retreat on 11 – 12 July 2017 in Milan, Italy.  These were two very productive days with the leaders of 15 pan-European cancer patient organizations. INCA is a member organization and was…

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