Patient Education Resources Available in Spanish

NETRF is working hard to eliminate barriers and identify ways to increase awareness and education for the NET community. We are committed to ensuring that people living with NETs have access to high quality and credible patient education. NETRF is thrilled to announce that we have begun to create and share NET cancer patient education resources in Spanish! You can find the resources here. Additionally, our first NETWise episode "What you need to know about NETs" is available in Spanish, along with a full Spanish transcription of the episode.

We're extremely grateful to TerSera Therapeutics for their sponsorship of the translated NETWise podcast. Stay connected as we will continue to build our Spanish NET resources. In the meantime, please share these resources with others who will benefit from them.

Funding Research to Find New Treatments

As the holiday season begins, we hope you will support NETRF with a year-end gift. We need your help now to fund scientists pursuing exciting research around the world. If NETRF cannot support these projects, we could miss an important advance in NET research. Hear more from Dr. Mark Lewis, a NET patient, oncologist, and member of NETRF's Board of Directors.

NETRF’s mission is to fund research to better understand what causes neuroendocrine cancer and how to cure it. NET research is underfunded as much as 10-fold, so NETRF must fill the gap. We have invested $34 million in 150 research projects since 2005.

Your gift to our 2022 Year-End Appeal will enable us to maintain momentum in groundbreaking neuroendocrine cancer research. Please make your gift to NETRF today. Your donation will be invested in new research grants that will be announced early in 2023.

Thank you for supporting NETRF and building a better future for NET patients and their families.

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NETRF CEO Elyse Gellerman presented the 2022 BTSI Research Award to Dr. Eleonora Pelle of the H. Lee Moffitt Cancer Center and Research Institute.

NETRF/NANETS award presented at NANETS2022 meeting

After being virtual since 2020, the North American Neuroendocrine Tumor Society (NANETS) met in person for its annual meeting in Washington DC in late October. NETRF CEO Elyse Gellerman and Director of Patient Education Jessica Thomas attended the NANETS Symposium to talk with NET specialists, a number of NETRF research grantees, and other NET patient advocacy groups. They joined more than 400 attendees dedicated to better understanding neuroendocrine cancer, improving patient care, and supporting patients through advocacy and education. Read more here.

Sites Added to COMPOSE Clinical Trial

Additional US study sites are now participating in an ongoing clinical trial of peptide receptor radionuclide therapy (PRRT) with 177Lu-edotreotide as a first or second line of treatment in gastroenteric or pancreatic neuroendocrine tumors.

The COMPOSE trial, sponsored by ITM, is comparing the safety, efficacy and patient-reported outcomes of 177Lu-edotreotide to the standard of care for patients who have a well-differentiated and aggressive grade 2 or grade 3, somatostatin receptor-positive (SSTR+) GI NET or PNET. Read more here.

KNOW YOUR NETs: Somatostatin Analogues

Somatostatin analogues play an important role in the management of symptoms for the NET patient. A somatostatin analogue is a synthetic version of somatostatin that slows down the production of hormones, especially the growth hormone and serotonin. This treatment can help to control the symptoms of carcinoid syndrome such as diarrhea and flushing. To learn more about somatostatin analogues, watch The Past, Present, and Future of Somatostatin Analogues by Dr. Andy Liao from our 2022 KNOW YOUR NETs Patient Education Conference.

NETRF@NORD

The connection between mental health and rare cancer was discussed at the 2022 NORD Breakthrough Summit. NETRF’s Director of Patient Education, Jessica Thomas, LCSW, participated on a panel that helped to address the unique mental health needs that rare cancer patients face and how to help address lack of mental health care and psychosocial support for rare cancer patients. NETRF is an active member of NORD and participant in the NORD Rare Cancer Coalition.

Dr. Elizabeth Zide completes Detroit half marathon

Congratulations to Dr. Elizabeth Zide on completing the 2022 Detroit half marathon, beating her personal record AND raising nearly $2,000 for NETRF!

She shared: "I DID IT!!! 1:59.56, just under the wire - but over 5 minutes better than my personal record! The day was perfect, the race started at 7 am, temperature in the 40's with very little wind. Seeing the sunrise while running over the Ambassador Bridge to Canada was beautiful and the enthusiasm of the crowd was great! I was so proud to complete the race and accomplish my goal!"

Dr. Zide was diagnosed in 2019 with NETs. Each year she participates in multiple competitions while raising money for NETRF.

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The mission of the Neuroendocrine Tumor Research Foundation is to fund research to discover cures and more effective treatments for carcinoid, pancreatic, and related neuroendocrine cancers.

NETRF is a 501(c)(3) organization. All contributions are tax-deductible to the extent allowed by law. To learn more,
view our Audited Financial Statements and IRS Form 990.

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