Congrats! You’ve Won A Spot On The 2019 Top-Rated List!

May 21, 2019

Congratulations!

Neuroendocrine Cancer Awareness Network Inc. has earned a spot on the 2019 Top Rated List! Your community has shared their inspiring stories about your work. We congratulate you on all of your accomplishments.

You’ll be featured on our site, our 2019 Top-Rated List, and distributed to media and corporate foundations.

Find out more about how YOU can help the NET Community.

Disclaimer: NCAN blog posts are the opinions of its writers and are not intended as a replacement for medical advice. Please consult your Health Care Providers for individual concerns.

Calling For NET Patients Nationwide To Help Advance The Field.

May 1, 2019

by Renuka Iyer, MD,
Chief, Gastrointestinal Oncology; Co-Director, Liver & Pancreas Tumor Center; Founder, Roswell Park Neuroendocrine Tumor Biobank

The mission of cancer research – to find better and more effective ways to treat or prevent cancer – begins with a better understanding of the disease. Knowing how a cancer begins and how it grows is an important first step toward fighting it and has led to remarkable advances in oncology.

But for rare cancer types like neuroendocrine tumors (NET), those advances have been few and slow. Research lags for the simple fact that the cancer is very rare, and each of the many subtypes is even more rare. Because far fewer people develop NETs than breast or lung cancer, for example, scientists have limited cases to study. No one cancer center has enough cases of the disease to make meaningful conclusions about it and advance the field.

In establishing the Neuroendocrine Tumor Biobank, Roswell Park aims to assemble the nation’s largest collection of NET cases – including biospecimens such as tumor and blood samples, plus patient medical and lifestyle information. Then we can finally begin to get some answers to our questions about neuroendocrine tumors, such as: What are the risk factors? What makes this cancer grow or spread? and How can we treat it more effectively?

How You Can Help

If you have been diagnosed with a neuroendocrine tumor, I urge you to consider participating in the NET Biobank. Your participation is voluntary, comes at no cost to you, and involves these important steps:

1. Fill out a questionnaire detailing your personal medical and treatment history.
2. Donate a small vial of blood, which can be drawn by your own physician or a laboratory near you.
3. Donate a sample of your biopsy or tumor (removed in a previous surgery). If you have had your neuroendocrine tumor biopsied or removed, we would ask your permission to have a small sample of that tumor sent to us from the facility that performed your surgery.

It’s estimated that about 170,000 people in the U.S. are living with neuroendocrine cancers. Collecting information and biospecimens from that many patients in one place would speed NET-focused research and lead to new treatment advances.

To get started, submit this online Pre-Screening form and we will contact you to discuss how you can be part of changing how we approach this cancer.

Find out more about how YOU can help the NET Community.

Disclaimer: NCAN blog posts are the opinions of its writers and are not intended as a replacement for medical advice. Please consult your Health Care Providers for individual concerns.

May 1, 2019
Washington, D.C.

The PAN Foundation today opened a new patient assistance program for people living with carcinoid syndrome. Carcinoid syndrome occurs when an underlying carcinoid tumor produces excessive amounts of serotonin, often due to liver metastases.

Carcinoid tumors are rare. The National Organization for Rare Disorders estimates 27 new cases per one million people are diagnosed in the U.S. each year—of which 10 percent develop into carcinoid syndrome. Qualifying patients are eligible to receive grants from PAN to pay for the deductibles, co-pays and coinsurance costs associated with their carcinoid syndrome treatment.

“High out-of-pocket costs present significant barriers to patient access and adherence to care—often forcing patients to forgo or delay treatment,” said PAN President and CEO Daniel Klein. “We strongly believe that high out-of-pocket costs should never prevent people from accessing the healthcare they need. Thanks to our generous donors, we are pleased to extend our assistance to people living with carcinoid syndrome, so that they can adhere to their treatments and better manage their conditions.”

Patients who qualify for the PAN Foundation’s Carcinoid Syndrome Assistance Program are eligible to receive $6,700 per year in financial assistance. Eligible patients must be getting treatment for carcinoid syndrome; must reside and receive treatment in the United States; must have Medicare health insurance; and the medication for which they seek assistance must be covered by their insurance and listed on PAN’s list of covered medications. In addition, patients’ income must fall at or below 500 percent of the Federal Poverty Level.

Patients, or advocates and caregivers applying on their behalf, can apply for assistance using the PAN Foundation’s online patient portal (www.panapply.org), or by calling 1-866-316-7263, 9 a.m. to 7 p.m. Eastern Time, Monday through Friday. To learn more about PAN’s nearly 70 disease-specific programs, visit panfoundation.org.

About the PAN Foundation:
The PAN Foundation is an independent, nationwide 501(c)(3) organization dedicated to providing help and hope to underinsured patients who are unable to afford the out-of-pocket expenses for their prescribed medications. Since 2004, PAN has provided over $3 billion in financial assistance to nearly 1 million patients who would otherwise be unable to afford their medications. To learn more, visit www.panfoundation.org.

Find out more about how YOU can help the NET Community.

Disclaimer: NCAN blog posts are the opinions of its writers and are not intended as a replacement for medical advice. Please consult your Health Care Providers for individual concerns.