Our collaborations with patient organizations
Working together with Global and European patient organizations
In neuroscience we have worked together with a number of Global and European patient communities.
“By working together, we are both dedicated to achieve our common goals: patients in the centre of our activities and to improve quality of life for patients and their carers.”
Uniting on health awareness
We understand how important driving health awareness is, be that by dedicated months, weeks, days, or longer-term programs. They help unite communities together to raise awareness and show support for people living with health conditions and their families, friends, and caregivers. Health awareness events are an important tool in helping to drive change.
Dystonia Awareness Month, September
In 2020, Ipsen partnered with Dystonia Europe to support and amplify their ‘Jump For Dystonia’ campaign. The campaign focused on celebrating freedom of movement with a jump, and increasing awareness and understanding of the far-reaching impacts of dystonia.
World Cerebral Palsy Day, 6 October
In 2020, on World Cerebral Palsy (CP) Day, Ipsen took part in the global ‘Make Your Mark’ initiative, which encouraged people to think of ways they have created something, set, and reached a goal, or come up with a new way to participate in an activity that felt inaccessible at first. Ipsen colleagues around the world used unique fingerprint graphics to show their commitment and support of people living with CP and their friends and families.
World Stroke Day, 29 October
In 2020, as part of the World Stroke Day ‘Join the MoveMent’ initiative, which focused on how being active can reduce the risk of stroke, Ipsen joined the world’s longest dance chain campaign as part of international efforts to unite the global community and show support for those affected by stroke.
Projects developed together with patient communities
Together with patient communities around the world we have worked on projects from research and development, to providing simple clinical study information, and patient support programs. The aim of these projects is to help make a difference for patients and their families and caregivers.
Find out what this impact looks like by exploring some our projects below.
Understanding the study experience
The Ipsen team held a workshop with advisors living with spasticity to understand how clinical studies, such as those in spasticity, could be adapted to better suit needs of their community. This will allow future studies to be more accessible for people with spasticity.
Our areas of expertise
Neurological conditions affect the brain, spinal cord, or nerves. Neurological conditions may have a number of causes, including genetic factors, traumatic injury, autoimmune conditions, and infection. Many neurological conditions can have a huge impact on everyday life, so getting the right information and support is really important for people living with these conditions, their families and their caregivers.36,37
In the Useful resources section of this page you will find links to patient organization websites where you might be able to find additional information and support.
You can also listen to stories from people affected by rare diseases in the Experiences of living with neurological conditions section below.
Different types of neurological conditions
While there are over 600 known types of neurological conditions,37 Ipsen specializes in the treatment of, and support for people living with specific types of movement disorders.
Spasticity is a condition where muscles are in a constant state of stiffness, which can interfere with movement, speech, or be associated with discomfort or pain.
Spasticity results from injury to the brain or spinal cord, and most cases are the result of stroke, traumatic brain injury, spinal cord injury, multiple sclerosis, or cerebral palsy.38 Cerebral palsy (sometimes shortened to CP) is a group of symptoms and disabilities that occurs when the brain has been damaged, most often when a baby is still in the womb or during childbirth. Spasticity occurs in approximately 75% of CP patients.39
Spasticity is considered a neurological condition because nerve pathways that connect the brain, spinal cord and muscles are disrupted, leading to overactivity of muscles and causing spasticity.38
It is important that the management of spasticity considers each individual, their goals for improvement, and how well they can incorporate different treatment or exercise regimens into their daily life.38
Blepharospasm is a rare neurological condition that causes the muscles around the eyes to spasm or twitch in way that can’t be controlled.
Blepharospasm happens when the part of the brain that controls eyelid muscles stops working correctly.40 Bright lights, stress, or even socializing, can make symptoms worse.41 The symptoms of blepharospasm can make it hard to do everyday things, like reading or driving.40
While there isn’t a cure for blepharospasm, there are treatments that can help with the symptoms.40
Hemifacial means ‘half of the face’. Hemifacial spasm is a neurological condition that only affects one side of the face and usually starts with a twitching in one eye and then moves to other muscles e.g. the cheek and mouth.42
There is a nerve for each side of the face, known as the facial nerve, that carries signals from the brain to make muscles in the face contract or relax. Hemifacial spasm can occur when something presses on the facial nerve somewhere along its course, affecting how the signals are carried from the brain to the face. This causes muscles to twitch (or contract), or to go into spasm when you don’t want them to.42
Treatment of hemifacial spasms include simple measures to keep the eyes comfortable and manage the occurrence of spasms.43,44
Cervical dystonia is the name for uncontrolled and sometimes painful muscle movements in the neck and head. It is caused by incorrect signals from the brain.
Cervical dystonia can sometimes affect another part of the body and how it progresses varies from person to person. Although it is a condition people have for life, there are treatments that can help to manage the symptoms of cervical dystonia.45
|Finding information and support
Neurological conditions are often complex, so finding websites with reliable information is really important. 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. For example:
Experiences of living with neurological conditions
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.