The Foundation Dedicated to Discovering a Cure for Neuroendocrine Cancer

Caring for Carcinoid Foundation

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10/29 CFCF Launches Major Immunotherapy Initiative

After a year of reviewing the research, consulting with experts, and engaging leading immunotherapy centers, the Caring for Carcinoid Foundation (CFCF) is thrilled to announce the launch of a major immunotherapy initiative. A treatment that uses the body’s own immune system to fight cancer, immunotherapy has led to dramatic results for some patients with other forms of cancer. We are eager to test the potential of immune-based therapy to provide similar breakthroughs for patients with neuroendocrine cancers.

The Caring for Carcinoid Foundation’s strategy brings leading experts - who have been involved in immunotherapy breakthroughs for other forms of cancer - to the cause of developing better treatments and cures for neuroendocrine cancers. It also includes a clinical trial for two major forms of neuroendocrine tumors (NETs): pancreatic and gastrointestinal (carcinoid) NETs.

10/28 US results from first global survey of neuroendocrine tumor (NET) patients reveal profound impact of this rare cancer on quality of life
  • Results show 94% of patients made lifestyle modifications as a result of their NET, including changes to diet, work, physical activities and social life1
  • Among those currently working nearly two-thirds had to take days off due to their NET, and among those not working 79% had to stop due to their NET1
  • Survey is a collaboration between Novartis and International Neuroendocrine Cancer Alliance; first data from largest US NET patient survey released for NET Cancer Day

East Hanover, N.J., November 3, 2014 Novartis together with the Carcinoid Cancer Foundation and the Caring for Carcinoid Foundation, member organizations of the International Neuroendocrine Cancer Alliance (INCA), today announced US results from the first global survey of patients with neuroendocrine tumors (NETs), a rare type of cancer1.

10/24 UPenn Patient Education Conference

Focus on Neuroendocrine Tumors: Patient & Caregiver Conference

Location:
Hilton Hotel
4200 City Avenue
Philadelphia, PA

Description:
Gain knowledge and take action by getting important information from our expert faculty. Receive hope and support by networking with others. This free patient education conference is being presented jointly by Penn's Abramson Cancer Center and the Caring for Carcinoid Foundation.

Conference Co-Chairs:
David Metz, MD - Gastroenterology Division
Debbie Cohen, MD - Renal, Electrolyte and Hypertension Division
Ronald Holander - Executive Director, Caring for Carcinoid Foundation

Click here to view the agenda.

Register now!

07/18 New Article Suggests Effectiveness of Drug for Prolonged Progression-Free Survival

An article published in New England Journal of Medicine suggests the effectiveness of Somatuline(R) Depot (R) (lanreotide) in prolonged “progression-free survival” for more than 65 percent of patients who took it in a late-stage clinical trial, conducted at 48 sites in 14 countries.

06/10 Agenda Now Available for 2014 LA Patient Education Conference

The agenda is now available for CFCF's 2014 LA Patient Education Program. 

To view the agenda, click here. 

To register for the event, click here

05/06 2014 Los Angeles Patient Education Event

The Caring for Carcinoid Foundation (CFCF) is dedicated to empowering patients and equipping them with a comprehensive understanding of treatment options so they can make the best informed decisions when deciding their care. In this spirit, CFCF is pleased to bring together our extensive community of patients, loved ones, medical professionals, and supporters for the 6th Annual Los Angeles Patient Seminar on Saturday, June 21, 2014.

Please join us for this half day conference to learn more about the latest in neuroendocrine cancer diagnosis and treatment. Expert speakers will give brief lectures and then answer questions from patients and caregivers in a moderated discussion.

04/03 Orphan Drug Designation for Gallium-68
The radiopharmaceutical Gallium-68 (DOTA0-hel-Tyr3) octreotide (Ga-68 DOTATOC) has been designated as an orphan drug by the US Food and Drug Administration (FDA) for the management of neuroendocrine tumors.
04/03 NET Leader Named to Prestigious PCORI Panel
We are pleased to announce that Josh Mailman, President of the NorCal CarciNET community and chairman of the Society of Nuclear Medcine and Molecular Imaging's Patient Advisory Board has been appointed to the Patient-Centered Outcomes Research Institute's (PCORI) newest panel on Rare Diseases.
04/03 Congrats to our Cycle for Survival Teams!
We would like to offer a big congratulations to our two Cycle for Survival teams who knocked their fundraising goals out of the park! The first team, captained by Dave McCoy has raised a combined total of $65,000, cycling in both New York City and Boston; while Hap Rowan's team in New York City managed to raise over $20,000! All money will go towards supporting NET cancer research.

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