CFCF       

2012 E-Update Number 11

Donate
In this Issue
WNCAD Alliance
Philadelphia Patient Education Conference
Worldwide NET Cancer Awareness Day
Charity Navigator
NVS logo
CFCF is pleased to announce that this E-Update is supported by Novartis Pharmaceuticals Corporation
Follow us on Twitter!

 

Like us on Facebook!

 

Visit us on YouTube! 

 

Survivor Story Photo  
Aaron Kent

CFCF is honored to present Survivor Stories. They reflect remarkable courage and determination. Thank you to our Survivors for sharing their courage and words of hope with other patients.

Read our newest survivor stories:
 Patricia S, Sandra Becham,

Give hope and a future to  neuroendocrine tumor patients: donate to CFCF where 100% of all individual donations go to carcinoid and related neuroendocrine tumor research.

CFCF is a 501(c)(3) organization-all contributions are tax-deductible.  We want our donors to know that we are allocating their donations responsibly and wisely to achieve a carcinoid cure as quickly as possible. 


To learn more, view CFCF's:
Audited Financial Statements
IRS Form 990

Caring for Carcinoid Foundation
198 Tremont Street, Box 456
Boston, MA 02116
617.948.2514
www.caringforcarcinoid.org
BBB Accredited Charity
CFCF meets all 20 Wise Giving Alliance standards for charity accountability established by the Better Business Bureau. Click here to check out the CFCF Wise Giving Report.
CFCF Joins the Worldwide NET Cancer Awareness Day (WNCAD) Alliance

Executive Director Ron Hollander is pleased to report that CFCF was invited to join the Worldwide NET Cancer Awareness Day (WNCAD) Alliance. This group is dedicated to raising awareness of NET cancer around the world. The invitation recognized CFCF's contributions as both a source of patient support/advocacy as well as its unique role as  a charitable foundation dedicated to research in pursuit of ways to control and conquer NET cancer. 

 

Ron recently returned from the first "summit" of the WNCAD Alliance in Europe. The meeting was attended by over 15 nations from five continents. As Ron says in his blog: "The summit was a moving example of cross-cultural collaboration and common issues."

Among the common themes:

  • The frustrating journey of patients navigating the process of misdiagnosis and late diagnosis seems to be a universal condition.
  • Despite differences in the structure of both the coverage and care delivery systems in the countries, access to the right expertise and latest treatments is still a challenge for far too many.

Ron also reports that his conversations with WNCAD members pointed to the need to help advocates and patients get access to timely, accessible, and reliable information on research. "There is a thirst for information that offers clear, well documented, and balanced perspectives on the process and prospects for research that can improve treatments and control the disease."

 

"There is clearly a need to call attention to the dearth of public funding of NET research" said Ron. As a "rare" disease, NET gets little support from the federal government, for example. But the opportunity doesn't stop there. "With all of the exciting research CFCF and others are supporting privately, we have an opportunity to help inform our patient and family community, both here in the US and abroad, about the range of projects that can give us hope for better treatments on the horizon."

 

Still Time to Register: UPenn Patient and Caregiver Education Conference

 

The Caring for Carcinoid Foundation, in partnership with the University of Pennsylvania Abramson Cancer Center, is proud to present their Focus on Neuroendocrine Tumors Patient and Caregiver Conference on Friday, November 2, 2012 at the Philadelphia Hilton Hotel. This educational conference will feature expert clinicians, patient discussion panels, and the latest news in neuroendocrine cancer research.

 

Parking is free and breakfast and lunch are provided for conference attendees. For those who are unable to attend in person, Penn Medicine's OncoLink with be running a webchat live from the conference. Participants will be invited to submit questions in advance, as well as view and participate.

This conference is being generously sponsored by Pfizer and NET Alliance, a Novartis Oncology program.   

 

For more information or to register to attend this educational event, click here.

 


November 10th is Worldwide NET Cancer Awareness Day: Join the "Virtual Event"
 

November 10th is WNCAD  and the Alliance (see article above) is encouraging groups around the world to share images of their events on a common website. The idea is to raise awareness and create a sense of connection with NET groups in every time zone demonstrating their existence and concern.

 

CFCF is encouraging all patient support and advocacy groups to post pictures of their events, whether   recent events or those actually taking place on the 10th , to join in this initiative. If you and/or your group are interested in posting pictures, please contact Laran Hyder.   

Charity Navigator Awards the Caring for Carcinoid Foundation with 4-star Rating

Charity Navigator, America's largest and most utilized independent evaluator of charities has awarded the Caring for Carcinoid Foundation the prestigious 4-star rating for good governance, sound fiscal management and commitment to accountability and transparency.  

 

Charity Navigator works to help charitable givers make intelligent giving decisions by providing information on more than five thousand charities nationwide and by evaluating their financial health. It calculates each charity's sore based upon several broad criteria, including how much is spent per dollar raised, what percentage of funds goes to programs vs. administrative and fund-raising expenses, and the organization's long-term financial health. It then assigns a rating from one to four, with four being the best rating.

 

Advertisement from our Sponsor             

 

 Learn More