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Help NETRF Crowdsource the 2021 Patient and Caregiver Conference Agenda
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We want you to plan the agenda for our NET Patient and Caregiver Conference that will be held virtually on Sunday, November 7, 2021. Tell us what you would like to learn about NET diagnoses, tests, treatments, symptom management, living with NETs and more. NETRF is committed to listening and following through on what we hear from patients and families. In 2020, NETRF asked patients what they wanted to learn, and the response was overwhelming. As a result of the feedback, NETRF, in partnership with the University of Chicago Medicine, was able to plan one of the nation’s most unique NET patient conferences. We’d like to build on the success in 2021. To make your voice heard, please answer a brief 10 question survey.
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NETRF Welcomes Two New Members to its Board of Scientific Advisors
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NETRF is pleased to welcome Dr. Matthew H. Kulke and Dr. Daniel M. Halperin to its Board of Scientific Advisors (BOSA), a volunteer council of highly distinguished medical and research leaders who share NETRF’s commitment to advancing the understanding, diagnosis, and treatment of neuroendocrine cancer. Although these renowned physicians may be new to the BOSA, they are not new to NETs or NETRF. In fact, they are both recognized as leading experts for their care of NET patients and research. (READ MORE)
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NETRF-Funded Grant Opportunity Through NANETS Now Accepting Applications
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NETRF is pleased to continue its collaboration with the North American Neuroendocrine Tumor Society (NANETS) to advance research, education, awareness and treatment of NETs by funding a NANETS Research Grant. The program supports innovative research initiatives and encourages young researchers and scientific clinicians to become NET specialists. Basic Translational Science InvestigatorNANETS grant portal is now open. Submissions are due by midnight PST on July 2, 2021. For eligibility criteria and instructions on how to apply, visit NANETS Grant Portal. (VISIT NANETS)
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Net One for NET Research In Memory of Brandon RaabeIf you could ask Brandon Raabe what a perfect day would look like, he would probably describe a Sunday afternoon in a brewery surrounded by good friends, family and big screen televisions in every direction broadcasting the Tottenham Hotspur’s latest match. For those of you who may not be soccer fans, the Tottenham Spurs are an English football club from North London, and they were Brandon Raabe’s favorite team. The 29-year-old soccer fan succumbed to neuroendocrine cancer in January of this year. On April 25th, his friends and family gathered at West Side Brewery in his hometown of Cincinnati, Ohio to raise a glass to his memory and to raise money to find a cure for the cancer that took his life too early. (READ MORE)
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NETRF 15th Anniversary Celebration ContinuesHonoring Our Faces of Philanthropy - Vickie Dailey
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Vicki Dailey is a NETRF Donor and Fundraising Event Organizer for Biking for Debbie. "I wanted to find a way to honor and support my beautiful sister in her journey and fight with this rare cancer and a way for her not to feel alone in her struggles," said Vicki. "I love my sister to pieces and would do anything I could for her. I also wanted to raise awareness, so I started a fundraising bike ride that has been going for over seven years now and I am proud to say that with the generosity of family, friends and strangers we have raised over $10,000! Debbie is the epitome of beauty, strength, and hope."
If you have a story to share about why you support NETRF, we’d love to hear from you. Please reach out to Susan.Payson@netrf.org to participate in this milestone celebration. (LEARN MORE)
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Center of Excellence Program Created for Pheochromocytoma and Paraganglioma
The Huntsman Cancer Institute and Penn Medicine are the first institutions receive a Center of Excellence designation from the Pheo Para Alliance. The newly created program recognizes institutions committed to providing cutting-edge, quality, multi-disciplinary care and participating in pheo- and para-related research. To date, the Pheo Para Alliance has received 11 applications from experienced pheo para centers. They hope to announce additional centers later this year. (LEARN MORE)
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Tune in Next Week for the NETWise Podcast on Pheos and Paras You can learn more about pheos and paras in our next NETWise podcast, coming next week. In Episode 14, you’ll have a chance to hear from NET experts from both of these newly designated Centers of Excellence. The episode features Samantha Greenberg, a genetic counselor and paraganglioma clinic manager at the Huntsman Cancer Institute, Bonnie Bennett, a nurse coordinator for the NET program at the University of Pennsylvania as well as leading pheo and para experts from around the country. For notification, sign up for our NETRF NETWise podcast notification. (SIGN UP)
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Global NET Campaign Shines Spotlight on Awareness of NET Specialists and TreatmentsIn collaboration with the International Neuroendocrine Cancer Alliance (INCA), NETRF is sharing statistics that demonstrate how awareness is lacking among NET patients and health care providers around the world about diagnostic options, treatments and services. Key findings show:
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- 27% of NET patients have never heard of NET specialists
- 47% of NET patients did not see a NET specialist in the preceeding 12 months
- 20% of patients are not aware of common diagnostics tools such as biopsy and CT scan
- 23% of health care professionals have never heard of PRRT
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To learn more about how you can help raise awareness, visit INCA’s webpage or follow along on NETRF’s social media channels. We are sharing messages every Monday from the campaign that highlights findings from the Survey of Challenges in Access to Diagnostics and Treatments for NET patients (SCAN).
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National Black Family Cancer Awareness Week to Create UnderstandingThe US Food and Drug Administration (FDA) in partnership with the Oncology Center of Excellence is launching a new community-based initiative to increase cancer awareness in one of the most vulnerable segments of the US population. National Black Family Cancer Awareness Week: Engaging the Generations will take place June 17-23, 2021. Unfortunately, black families are among the most vulnerable and hardest hit for cancer risk, diagnoses and poor outcomes. The awareness week aims to change that by building positive recognition for clinical trial participation and increasing minority specimen donations to national genetic databases for cancer research.
Learn more about National Black Family Cancer Awareness Week or to follow the conversations on social media, follow #BlackFamCan
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Order Your Copy NowNETRF Patient Guide to Neuroendocrine Cancer
Since its launch in November 2019, nearly 3,600 NET patients, family members and providers in the United States have requested copies of our Neuroendocrine Cancer Guide for Patients and Families in addition to nearly 400 international requests. The 64-page guide is a hands-on reference for the tests, treatments, and management of gastrointestinal, pancreatic, lung, and adrenal neuroendocrine tumors. It offers a solid overview of NETs for the newly diagnosed patient, serves as a helpful reference for longer-term survivors, and gives practical tips on nutrition, diarrhea, and patient/provider communication for those at any stage of the disease. Request your guide now. (ORDER NOW)
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| WE'D LIKE TO EXTEND A SPECIAL THANKS TO ADVANCED ACCELERATOR APPLICATIONS, A NOVARTIS COMPANY,FOR SPONSORING THE MAY EDITION OF NETRF'S eUPDATE.
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