Our collaborations with patient organizations
Working together with Global and European patient organizations
Ipsen has worked together with a number of Global and European communities supporting people affected by cancer:
“The International Kidney Cancer Coalition (IKCC) views Ipsen as a key leader in helping to amplify the patient voice and make a meaningful difference to people living with kidney cancer. It is clear that they share our vision: To reduce the global burden of kidney cancer.”
The International Kidney Cancer Coalition (IKCC)
“As the incidence of liver cancer in Europe keeps rising, we had to act now. For the first time, we have produced a social media campaign to raise awareness about the signs and symptoms of liver cancer as well as preventive measures that can help reduce its risk. To bring this neglected topic in the political agenda, we have drafted and launched in collaboration with European Liver Patients’ Association (ELPA) our White Paper on Liver Cancer – No Patient Left Behind. The summary document of the White Paper will be translated in several of our Members’ languages and will be used as the basis to initiate at national level discussions about how to improve liver cancer prevention, diagnosis, treatment and patient care. We look forward to supporting our Members implement the findings of the White Paper in their respective countries. We are delighted that Ipsen is among the funding partners supporting these activities.”
Digestive Cancers Europe (DiCE)
“We have a long-standing trusting relationship with Ipsen who have helped advance many of our major strategic initiatives targeted at improving outcomes for patients with neuroendocrine neoplasms.”
International Neuroendocrine Cancer Alliance (INCA)
World Kidney Cancer Day
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In 2022 we joined colleagues and organizations around the world, on World Kidney Cancer Day, to raise awareness of the positive impact of shared decision making on long-term care, treatment decisions and quality of life. As part of the global Together for Kidney Cancer campaign, people living with RCC gave their perspective on why an open, informative and collaborative relationship with their healthcare professional has been so important to their care journey.
Projects developed together with patient communities
Together with patient organizations around the world, we have worked on projects covering research and development, clinical study information, and patient support programs. The aim of these projects is to help make a difference for patients, their families, and caregivers.
Explore some our projects below:
Recipe guides for people living with kidney cancer in France
Weight loss is experienced by 30-50% of people living with kidney cancer and many may be affected by undernutrition before treatment begins. Ipsen teams in France worked together with the patient organization A.R.T.u.R. (Association pour La Recherche sur les Tumeurs du Rein) to help people to eat well and improve treatment experiences.
Raising awareness of prostate cancer treatment side effects in the UK
A meeting in June 2020 with patient organizations identified that men living with prostate cancer struggled to talk about the side effects of their treatment. Ipsen collaborated with Prostate Cancer Research & Tackle Prostate Cancer, two of the biggest national charities in the UK dedicated to prostate cancer, to research the issue and develop videos to support the community to have better conversations about these topics.
A patient support program for people living with NETs
Ipsen Australia collaborated with the patient organization Neuroendocrine Cancer Australia to better understand the unmet needs among people living with NETs. The insights were used to implement changes to their existing program, assistBEYOND to create Ipsen Assist, which supports home visits by nurses to enable community administration of injections.
Our areas of expertise
Cancer is a common terminology which describes when abnormal cells in the body divide in an uncontrolled way.
There are more than 100 types of cancer, but Ipsen’s work focuses on a select number of cancer types.
In the Useful resources section of this page you can find links to Ipsen websites where you might be able to find additional information for different types of cancer and how to access physical and emotional support.
You can also listen to stories from people affected by cancer in the Experiences of living with cancer section below
Kidney cancer
Kidney cancer develops when abnormal cells in either of the kidneys start to divide and grow in an uncontrolled way. The kidneys are made up of different types of cells and the type of cancer depends on the type of cell the cancer starts in. The most common type of kidney cancer is renal cell carcinoma (RCC). It starts in the cells lining the tubules (the smallest tubes) inside the kidneys.1
It’s not clear what causes most kidney cancers but there are a number of factors that can increase the risk of getting kidney cancer. These include older age, smoking, obesity, high blood pressure, having had treatment for kidney failure, certain inherited conditions and a family history of kidney cancer.2
A doctor will advise what treatment options are available depending on the stage and type of kidney cancer that has been diagnosed.
Liver cancer
The liver is a large organ to the top right side of the stomach that helps digest food and remove toxins. When liver cancer starts in the liver it is known as primary liver cancer. When it has spread from another organ to the liver, it is known as secondary liver cancer.
Hepatocellular carcinoma (HCC) is the most common type of primary liver cancer3 and can occur in people who have a damaged liver (from causes such as hepatitis B or C virus or long-term alcohol consumption). HCC is also more common in men than women and the risk of developing HCC can increase with age.4
A doctor will advise which treatment options are available depending on the size and location of the HCC, how well the liver is functioning, and overall health.3
Breast cancer
Breast cancer occurs when breast cells begin to develop abnormally. Breast cancer can affect both men and women but is more common in women.5 Individual risk of developing breast cancer can depend on hormone levels, age, genetic mutations, lifestyle and environmental factors, as well as family history.5
Around one in eight women are diagnosed with breast cancer in their lifetime6, but there is a good chance of recovery if it is detected at an early stage.7 Treatment of breast cancer depends on is the size of the tumor, the node involvement and whether it has spread to anywhere else in the body.5
Neuroendocrine tumors (NETs)
Neuroendocrine tumors (NETs) are a group of rare tumors that can develop in many different cells in the body, most commonly the tumor starts in the lungs, gastrointestinal tract, and pancreas.8 The neuroendocrine system is made up of nerve and gland cells called neuroendocrine cells. These cells release hormones into your body that generally regulate the function of different organs.8 When neuroendocrine cells change and grow uncontrollably, NETs can develop. They usually grow slowly over many years, but there are fast-growing forms. NETs may be non-cancerous (benign) or cancerous (malignant).9
These tumors can affect any individual, but there is a greater risk in people who have the rare condition called multiple endocrine neoplasia 1 (MEN1).10
NETs usually grow slowly and people often don’t develop symptoms for many years, making NETs difficult to diagnose. But some NETs grow faster than others and spread to surrounding tissues and other parts of the body. Treatment will depend on where the NET was originally located, the size of the tumor, whether it has spread, and the symptoms experienced.10 The goals of treatment for NETs are to, where possible, remove the tumor by surgery, reduce symptoms, (when applicable) control the tumor growth, and maintain a good quality of life.11
Prostate cancer
The prostate is a small gland located below the bladder in men. The prostate can get larger with age and this is known as benign prostate enlargement.12 However sometimes the growth can be malignant which is known as prostate cancer. One of the most common types of cancer in men is prostate cancer.13 Some risk factors that increase the chance of developing prostate cancer include aging (particularly over 65 years of age), being of African or African-Caribbean descent, a family history of prostate cancer, and obesity.14
Treatment depends on whether the cancer is located only in the prostate or has started to spread to other parts of the body, as well as overall health. Typical treatment options may include surgery, pelvic irradiation, testosterone lowering drugs (known as hormone therapies), and chemotherapy.15
Thyroid cancer
The thyroid is a butterfly-shaped gland at the base of your neck. The thyroid produces hormones that regulate your heart rate, blood pressure, and body temperature.16
One of Ipsen’s focus areas is in a rare type of thyroid cancer, called medullary thyroid cancer. This type can spread to different parts of the body, including the liver or lungs, and occurs in certain types of thyroid cells called C cells. Medullary thyroid cancer account for around 2% of thyroid cancers, and a quarter of these are caused by an inherited faulty gene.17,18
Surgery is the primary treatment for thyroid cancer. If the disease becomes more advanced, a doctor can advise on other types of therapy available, such as systemic therapy.19
Useful resources
Dedicated websites built with the patient community
Ipsen has worked together with patient organizations and healthcare professionals to create websites for people living with some types of cancer.
Living with NETs (Neuroendocrine tumors)
Living with NETs is not something that you have to do alone. There is always help and support available if needed.
On the Living with NETs website you can find patient support groups and a list of specialist NETs clinics, along with stories from people living with NETs and healthcare professionals. You can also find answers to questions people diagnosed with neuroendocrine cancers often ask.
everydaywins® (Breast cancer)
The everydaywins® website is an initiative sponsored by Ipsen and developed in partnership with patient associations, including Europa Donna. The objective of this initiative is to provide people with general disease and treatment information as well as tips and tutorials on how to live well with breast cancer.
If you have any questions about an Ipsen medicine or service you can submit a question to Ipsen medical information here. As a pharmaceutical company we are not permitted to provide you with medical advice so for any questions about treatment and care, a healthcare professional is the best person to speak to.
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Finding information and support
It can sometimes feel overwhelming to look for information about a condition. As well as speaking to a doctor or other healthcare professionals, there are a number of websites that offer reliable and accurate information. Patient organization websites are often a good place to start for information and guidance on how to access physical and emotional support. If you don’t know what local organizations exist, Global and European organisations can often help people to find local resources and groups. |
Experiences of living with cancer
Although discovering that you are living with a certain condition might feel quite daunting at times, you are certainly not alone. Behind every person, there is a story and we believe you tell that story best.
If you have been affected by any of the experiences or topics discussed in this video, talk to your healthcare professional who may be able to direct you to the additional support you need.
