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.
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.
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.
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.
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.
NCAN 2024 NOLA NET Patient Conference – Metairie, LA REGISTER TODAY! May 18th, 2024. Please join us Saturday, May 18th for the not-to-be-missed, in-person NCAN 2024 NOLA NET Patient Conference in Metairie, LA. • ADVICE FROM EXPERT NET DOCTORS • INFORMATION FOR PATIENTS, CAREGIVERS, FAMILY MEMBERS, AND ADVOCATES • COVID-19 SAFETY PROTOCOLS • THE LATEST ON RESEARCH AND TREATMENTS • BUILD YOUR NETS KNOWLEDGE • LEARN TO BE YOUR OWN BEST ADVOCATE • HAVE FUN CONNECTING WITH OTHER ZEBRAS
NCAN 2024 Tennessee NET Patient Conference – Nashville, TN REGISTER TODAY! September 28th, 2024. Please join us Saturday, September 28th for the not-to-be-missed, in-person NCAN 2024 Tennessee NET Patient Conference in Nashville, TN. • ADVICE FROM EXPERT NET DOCTORS • INFORMATION FOR PATIENTS, CAREGIVERS, FAMILY MEMBERS, AND ADVOCATES • COVID-19 SAFETY PROTOCOLS • THE LATEST ON RESEARCH AND TREATMENTS • BUILD YOUR NETS KNOWLEDGE • LEARN TO BE YOUR OWN BEST ADVOCATE • HAVE FUN CONNECTING WITH OTHER ZEBRAS
The 2024 “Stride For Stripes” Virtual Zebra Walk Across America Benefiting The Neuroendocrine Cancer Awareness Network. I’M READY TO HELP FIGHT NEUROENDOCRINE CANCER! If you want to help support NCAN’s programs and can’t attend an in person walk, then our Virtual Zebra Walk is for you! It’s a simple and easy way for you to hold an event in your area any time, any place that works for you. Register Today!
The 2024 “Stride For Stripes” Charlotte, NC Zebra Walk Benefiting The Neuroendocrine Cancer Awareness Network. I’M READY TO HELP FIGHT NEUROENDOCRINE CANCER! Join the fun and walk to help support the NET community. Bring your family and friends! Register by October 1st to receive your T-shirts by mail in time for walk. 6220 PARK ROAD PARK • CHARLOTTE, NC • SATURDAY NOVEMBER 2nd, 2024 NOON – 3:00PM • RAIN OR SHINE Register Today!
NCAN “Celebration of Life” Gala 2024 It is with great pleasure that the Neuroendocrine Cancer Awareness Network’s Board of Directors invites you to join us at the 20th Anniversary ‘Celebration of Life’ Gala. It’s an evening of sharing- with Dinner, Cocktails, Dancing, a Silent Auction and Raffles. Funds raised will benefit neuroendocrine cancer patients and get us one step closer to a cure! SAVE THE DATE Take Action, Make a Difference! It is not just about celebrating 20 years of NCAN’s dedication to the NETs community. It’s about raising awareness and funds for research and providing support to those affected by NETs. Be part of an organization that makes important programs like these available to neuroendocrine cancer patients: Patient Hotline, Patient Conferences, Podcasts, Information Packets, Support Group Assistance, and Funding for Research. How to purchase your gala tickets/donate: Tickets to this fabulous event are $135 per person Discount price for a table of 10 is $1,250 Make life better for NET patients and have fun doing it. You can reserve your place at the gala by clicking here. To Mail in a Donation: Please Make Checks Payable to NCAN Inc., and mail to NCAN, 3074 Brookchase Blvd Fort Mill, SC 29707 Questions? Please email us at info@netcancerawareness.org or call 866-850-9555. 2nd Thomas O’Dorisio Award will be presented. Sponsorship opportunities are available. If you have questions please call Bob at 516 404 9058 or email bob@netcancerawareness.org. The power of your contribution, large or small, makes a difference: • $25 provides supplies to a patient support group for a month • $50 supplies a comprehensive patient information packet to a neuroendocrine cancer patient, ensuring that the patient will be a good advocate for his/her care • $100 from 20 donors sends an expert to provide urgently needed information at a patient conference • $200 keeps the patient hotline open for a month • $500 sponsors a patient to attend a regional patient conference • $1,000 sponsors a doctor to learn more about neuroendocrine cancer and earn CME credits • $2,000 starts the ball rolling toward a regional patient conference When Saturday November 9th, 2024 6:00 p.m. to 11:00 p,m. Where The Sterling 345 Hicksville Rd Bethpage, NY 11714 Hotel room block has been made at: The Long Island Marriott at a discount rate of $209/King room, $219/Double room Please call the reservation line (800) 228-9290 to make reservations under NCAN or use the reservation link here. Can’t make it to the event? Donations gratefully accepted in support of NCAN’s programs!
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