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Emirates Oncology Society (EOS) and Ipsen, a global biopharmaceutical company, have helped the UAE enter the record books once again. At an event held on World Neuroendocrine Tumor(NET) Cancer Awareness Day, teams from the two organizations gathered at Dubai’s Al Habtoor Polo Club to create the world’s largest awareness ribbon. Displaying the ‘zebra’ print associated with the condition’s awareness activities, the final ribbon measured a staggering 4.8km² – breaking the previous record by more than twice the size.

NETcancers begin in the neuroendocrine cells. The neuroendocrine cells act as a network that keep us healthy by monitoring what is happening in our bodies and communicating to each other to release substances such as hormones, to ensure our body functions properly¹. For example, within our lungs, they produce hormones that regulate our breathing and within our digestive system, they produce hormones that help break down food. NETs can therefore produce a number of different symptoms – or none at all – depending on where in the body the cancer has affected. There are many different types of NETs, some of which, are slowly growing over years while others are fast growing from days to weeks.

The incidence of NET cancers is increasing globally. Although rare, the cancer has a substantial impact on patient’s lives² with regards to symptoms, work and daily life. Due to the often-non-specific nature of symptoms they present, and a general lack of awareness, misdiagnosis or delays in diagnosis are common³. In fact, a global survey found that almost 60% of NETs are at an advanced stage when diagnosed, leading to more severe symptoms, reduced quality of life and impacting overall survival rates⁴. Additional studies have noted a number of challenges in treating patients with NETs, including overall limited understanding of the cancers, limited investment in NET research, and difficulty in finding the right sequence of treatment⁵. 

President of the Emirates Oncology Society, Professor Humaid Al- Shamsi said “Awareness of NET cancers is generally low, but the impact they have on our patients is significant. Additionally, they are particularly complex to diagnose, presenting in many different forms and displaying many different symptoms, meaning they often go undiagnosed for a long time. Together, these factors result in overall more complex treatment pathways and increased mortality and highlight a clear need to raise awareness of NETs among both our patient and healthcare communities.

“The EOS is dedicated to supporting the UAE’s cancer patients as they face one of the greatest challenges of their lives. We value the opportunity to participate in initiatives such as this, that aim to raise awareness of cancers such as NET, that are often overlooked, because when communities come together, we really can make a difference.”

Khaled Elrefae, General Manager for IpsenMiddle East and Africa said“Transforming the lives of patients living with debilitating conditions such as NETs is of the upmost importance to Ipsen. As a company, we are committed to supporting the needs faced by patients living with rare diseases, and we consistently focus on introducing innovative treatments and breakthrough medicines that help enhance their quality of life. For rare conditions such as NET cancer though, the unmet need is underpinned by lack of awareness around the condition. We are extremely proud to be working with an organisation such as the EOS, as together we show our support to the UAE’s NET cancer community.”

World NET Cancer Awareness Day is an annual event, coordinated by the International Neuroendocrine Cancer Alliance (INCA), created to increase awareness of NET cancers and to provide a voice to the NET community for improved diagnostics, treatments, information, care, and research. They focus on events and activities that will increase community awareness of this often-misdiagnosed form of cancer and encourage everyone to share the ‘NET cancer day ribbon’ which carries a distinctive zebra print. The zebra was adopted as the international symbol of the group, as the word ‘zebra’ is used by the medical community to describe any particularly rare disease or condition.

With regional headquarters in Dubai Healthcare City, Ipsen is a biopharmaceutical company dedicated to addressing life-threatening and underserved diseases through transformative medicines in oncology, rare disease, and neuroscience. Ipsen’s particular areas of expertise include NETs,as well as prostate cancer, breast cancer, spasticity, and renal and hepatocellular cell carcinoma among others.The company has made significant strides in building a rare disease franchise for the next decade.