Tag: rare diseases

Susan Anderson Selected as Winner of 2012 Warner Advocacy Award

“Sunny Susan” Anderson Wins 2012 Warner Advocacy Award

December 11, 2012

When “Sunny Susan” Anderson began her search on the Internet in 1995 for information about carcinoid cancer little did she realize that she would later create the first carcinoid patient website and become an extraordinary advocate for others seeking…

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Pablo Lapuerta, MD

Lexicon Pharmaceuticals Begins Phase 3 Clinical Trial of Telotristat Etiprate in Patients with Carcinoid Syndrome

December 4, 2012

Patients with metastatic carcinoid syndrome will have the opportunity to participate in a new Phase 3 clinical trial of Lexicon Pharmaceutical’s telotristat etiprate (LX1032), an oral drug candidate designed to treat carcinoid syndrome by reducing…

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Eric Liu, MD

Archived Neuroendocrine Tumor Webinar by Dr. Eric Liu Now Available

November 16, 2012

Dr. Eric H. Liu, Director of the Neuroendocrine Center and Director of Surgical Services at Vanderbilt University Medical Center in Tennessee, presented a live webinar on August 22, 2012 entitled Imaging of Neuroendocrine Tumors and Obstacles to Diagnosis.

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Cycling the C&O for Carcinoid

Cycling the C&O Canal for Carcinoid

August 12, 2012

When Diane and Dwight Mikulis cycle the 184 miles of the Chesapeake & Ohio Canal this summer, they will bring greater awareness to the rare cancer that Diane’s mother, Stella Mae Lux Behers, battled for six years after being diagnosed in 1996. Like …

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Zebra Cartoon, Episode 1

Worldwide NET Cancer Awareness Day Alliance Launches Zebra Cartoon Sequel

July 11, 2012

Global recognition of the need for NET (neuroendocrine tumor) cancer awareness will be marked by the third annual worldwide NET Cancer Day on November 10, 2012.  In anticipation of the day, the Worldwide NET Cancer Awareness Day Alliance has launched…

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Tannis Brown

Neuroendocrine Cancer Survivor Featured on Discovery Fit & Health TV Show

July 8, 2012

THIS JUST IN:  Tannis Brown, a pheochromocytoma patient and Vice President of the Pheo Para Troopers, will be featured on the Discovery Fit & Health Network on Monday, July 9 in a program titled Diagnosis: Dead or Alive.* The 60 minute show will focus…

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Monica Grundmann & Stallion

Monica Grundmann Dedicates Championship Ride to Carcinoid Cancer Awareness

July 2, 2012

Congratulations to carcinoid cancer survivor Monica Grundmann on winning the OCTRA 25 mi/40 km Competitive Trail Ride in Stormont, Ontario, Canada with her MORAB stallion, Excalibur Legend, on  June 10th (check out those zebra striped gloves!!). …

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OLYMPUS DIGITAL CAMERA

Mud Cats Little League Team Raises Awareness for Carcinoid Cancer and Funds for the Carcinoid Cancer Foundation

June 26, 2012

To the amazing Mud Cats Little League Team, their coaches, families and friends we say a huge THANK YOU!!! Raising awareness about carcinoid cancer and funds for the Carcinoid Cancer Foundation was the goal of the June 2, 2012  Loudoun County, Virginia…

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My NET Manager Mobile App for Carcinoid Cancer and Neuroendocrine Tumor Community

First Mobile App for Carcinoid and Neuroendocrine Cancer Community Goes Live

June 15, 2012

The first mobile app for carcinoid cancer and neuroendocrine tumor (NET) patients is now available for downloading on the iPhone, iPad, and Android!  My NET Manager, a free app provided by Novartis Oncology, offers patients a unique opportunity to track…

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New Orleans Cuisine

National Carcinoid and NET Patient Conference: Have You Registered?

May 31, 2012

Have you registered for the national carcinoid and NET patient conference in New Orleans, September 20 – 22?  The hotel is over 90% booked and registration is nearing capacity!  This is a wonderful opportunity to learn more about carcinoid and …

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