Advanced Accelerator Applications International (AAA), a Novartis company, is recognizing NET Cancer Day November 10, 2019 with their second annual Hope Is Like Air campaign to raise awareness of neuroendocrine tumors (NETs). NET Cancer Day was founded by the International Neuroendocrine Cancer Alliance (INCA). AAA and NET patient organizations in the US, Europe and Canada are joining forces to shed light on this rare, often misdiagnosed form of cancer by displaying thousands of zebra-striped pinwheels in green spaces and as part of special events in the US, Europe and Canada.
NET patient advocacy groups participating in the Hope Is Like Air pinwheel project include Arizona Carcinoid and Neuroendocrine Foundation, The Healing NET Foundation, Los Angeles Carcinoid Neuroendocrine Tumor Society, The Carcinoid Cancer Foundation, Neuroendocrine Tumor Research Foundation, Neuroendocrine Cancer Awareness Network, Northern California CarciNET Community, PheoPara Alliance and Run for The Stripes in the US; as well as Association de Patients porteurs de Tumeurs Endocrines Diverses (APTED) France, Association of Patients and Supporters of Neuroendocrine Tumors Poland, CNETS Canada, NET Patient Association Belgium, Foundation Pro Endocrinologia Poland and EuropaColon Portugal.
“NET is typically a slow-growing cancer, making the need for endurance, strength and hope critical to patients and their caregivers”, said Rachel Levine, Global Head of Communications and Patient Advocacy AAA. “Our goal with the Hope Is Like Air campaign is to support patients and their loved ones as they navigate their NET journey.”
Zebra stripes are the symbol of neuroendocrine tumors, meant to signify the individuality of each patient and their disease. According to The National Geographic Society, the zebra has the most unique coat of all animals. Each individual zebra has its own striped pattern and no two are exactly alike. Similarly, no two NET cancer patients are the same. Zebra stripes are also meant to encourage medical professionals to consider diagnoses beyond the most common ones. As the disease is rare and often overlooked, the neuroendocrine tumor community encourages healthcare providers to metaphorically consider the rare and unexpected possibility of a zebra, not a common horse, when they hear hoofbeats.
About Neuroendocrine Tumors1
Neuroendocrine tumors, or NETs, are a rare type of cancer that originate in neuroendocrine cells throughout the body. They are most often found in the gastrointestinal tract, lungs or pancreas. Each year 6.98 out of every 100,000 people are diagnosed with NETs2. NETs can be defined as functional or nonfunctional. Functional NETs are characterized by symptoms caused by the over-secretion of hormones and other substances, while nonfunctional NETs may be clinically silent.
Symptoms often appear once the tumor produces hormones or grows into surrounding tissues and organs. Non-specific signs and symptoms of NETs include, but are not limited to, abdominal pain, asthma-like wheezing, diarrhea, fatigue, flushing, nausea, weight loss, and unusual bleeding.
NETs tend to grow slowly and can have no symptoms or vague symptoms that can be mistaken for other conditions. As a result, NETs are often diagnosed at an advanced stage, meaning the cancer cells have already spread to other parts of the body.
Participating Patient Group Websites
- Arizona Carcinoid and Neuroendocrine Foundation
- Association de Patients porteurs de Tumeurs Endocrines Diverses (APTED) France
- Association of Patients and Supporters of Neuroendocrine Tumors Poland
- Carcinoid Cancer Foundation
- CNETS Canada
- EuropaColon Portugal
- Foundation Pro Endocrinologia Poland
- Los Angeles Carcinoid Neuroendocrine Society (LACNETS)
- NET Patient Association Belgium
- Neuroendocrine Cancer Awareness Network
- Neuroendocrine Tumor Research Foundation (NETRF)
- Northern California CarciNET Community
- PheoPara Alliance
- Run for the Stripes
- The Healing NET Foundation
2 Dasari A, et al. Trends in the incidence, prevalence, and survival outcomes in patients with neuroendocrine tumors in the United States. JAMA Oncol. 2017; 3(10):1335-1342.