Lennox-Gastaut syndrome

Paving a better future for people living with Lennox-Gastaut syndrome

Vandenbruaene Nathalie — Mon, 09 Sep 2024 08:26:26 +0000

Paving a better future for people living with Lennox-Gastaut syndrome

Konrad Werhahn, Global Medical Affairs

Vandenbruaene … Mon 09/09/2024 - 10:26

For over 30 years, we have provided solutions that have helped improve the lives of millions of people living with epilepsy. Through both our initiatives and collaborations with partners, we are always striving to use our expertise to make a difference in the lives of people living with epilepsy.

A priority focus area for ��ֳ� is Lennox-Gastaut syndrome (LGS), a rare severe form of epilepsy with a significant burden for patients and families and high unmet medical need.

What is LGS?

LGS affects an estimated one million people worldwide; it is a severe childhood-onset developmental and epileptic encephalopathy (DEE), a group of epilepsies associated with developmental impairment, and characterized by several different seizure types.

People living with LGS often experience drug-resistant seizures, meaning that multiple treatment attempts have failed to help them to minimize seizure burden, which makes the condition extremely difficult to treat. Overall mortality and Sudden Unexpected Death in Epilepsy (SUDEP) are also major concerns for people living with LGS and their loved ones.

The impact of LGS goes beyond seizures and includes cognitive impairment, communication difficulties, psychiatric symptoms, sleep and behavioral challenges, and mobility problems. All of these issues significantly impact both patients’ and caregivers’ quality of life.

Why is there a significant unmet need in LGS?

A ��ֳ�-supported study presented at the 15th European Epilepsy Congress 2024 highlighted the significant burden for people living with LGS in Europe, featuring data from 454 people living with LGS.

The main findings from the study included:

People living with LGS experience both seizure and non-seizure impairments, that become increasingly significant with age
Despite people with LGS on average receiving more than three antiseizure medications each day, only 13% report good or very good quality of life
19% of people with LGS report severe or very severe physical impairment, while 28% report severe or very severe mental impairment

The study authors suggest that these findings point to an unmet need for therapies which can target both drug-resistant seizures and the non-seizure impact of LGS, to improve care for people living with the condition.

The study also found that the mean age of LGS diagnosis (five years old) was roughly a year later than the most common age of seizure onset (four years old). It’s vital that the time to diagnosis is reduced and that we build awareness of LGS to enable earlier intervention to improve outcomes for people living with the condition.

Our commitment to the LGS community

LGS is difficult to diagnose because of the lack of specific biological markers of the condition, multiple possible causes, and varied presentation of symptoms.vi At the European Epilepsy Congress (EEC), ��ֳ� presented details of a new LGS electronic decision-assisting tool based on the International League Against Epilepsy (ILAE) diagnostic criteria. Developed by a group of ten epilepsy experts1, the tool is designed to help physicians evaluate the likelihood that their patient has LGS.

It is hoped the online tool will drive disease awareness and encourage HCPs to consider LGS as a potential cause of the challenges that the patient is facing, potentially accelerating diagnosis and helping families living with LGS to receive the support they need sooner.

The importance of collaboration

Both in LGS and across the epilepsies more broadly, we are reminded of the importance of collaboration and knowledge sharing to build a better future for people living with epileptic conditions.

At ��ֳ�, we are driven to keep pushing forward with scientific innovation to better understand these life-changing conditions, the challenges being faced by the community, and how we can offer improved care to patients, their caregivers, and families. We stand with the epilepsy community and are committed to making a real difference to their lives.

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Epilepsy Awareness Month: Increasing Knowledge, Support and Advocacy

Vanco Vlastimil (��ֳ� S.A.) — Wed, 22 Nov 2023 10:57:33 +0000

Epilepsy Awareness Month: Increasing Knowledge, Support and Advocacy

Nick Francis, Global Communications & Company Reputation

Vanco Vlastimi… Wed 22/11/2023 - 11:57

In November, ��ֳ� joins the world in recognizing Epilepsy Awareness Month, which commenced on November 1st with International Lennox-Gastaut syndrome (LGS) Awareness Day. More than one million children and adults worldwide live with LGS, a severe, rare epilepsy syndrome that is often difficult to treat.

At ��ֳ�, we have a legacy commitment to the epilepsy community and remain dedicated to developing better solutions that address unmet family needs. Through our engagement with people living with epilepsies, like LGS, we often hear that it can be isolating — both physically and mentally for patients and caregivers. This risk underscores the critical importance of a strong sense of community and network of support that patient advocacy groups provide.

With recruitment support from the LGS Foundation (LGSF), ��ֳ� conducted a caregiver advisory board to better identify key issues affecting the needs of caregivers and their diagnosed loved ones through the journey of diagnosis, management, and treatment. Research findings were presented at NORD’s Rare Disease and Orphan Products Breakthrough Summit. With more than 900 rare disease advocates, experts, and stakeholders from around the world present, LGS was represented in the exhibit hall along with other pressing issues facing the rare disease community.

The research findings presented at the Breakthrough Summit highlighted the challenges faced by caregivers of people with LGS, from navigating multiple misdiagnoses to feeling overwhelmed by the complexity of the condition. Caregivers underscored the importance of early diagnosis, a trustworthy care team and peer-to-peer support groups to better care for someone with LGS. When asked about educational resources, patient advocacy groups, especially the LGSF, were the most valued source of information used by caregivers of people with LGS.

“The research findings we presented at NORD highlight the importance of supporting and connecting caregivers and families who live with the challenges of epilepsy and seizure disorders every day. As an additional outcome of this research, we launched Shine Forward with LGS (www.shineforwardwithlgs.com) as a complimentary resource to LGSF, to provide education, tips, and tools to support the entire LGS family, built by caregivers, for caregivers.” – Ross Lu, Study Investigator, Epilepsy & Rare Syndromes at ��ֳ�

“As demonstrated by the insights presented at NORD, supporting the epilepsy community extends well beyond treating the seizures. Extending care support services and holistic programs to persons living with epilepsy and their families is essential.” – Andrea Wilkinson, Study Investigator and Global Patient Engagement, Epilepsy & Rare Syndromes at ��ֳ�

To kick off Epilepsy Awareness Month, our global and US teams also participated in the 11th Annual Epilepsy Awareness Day at Disneyland^® in California to bring expert health providers, disease education and solutions to patients and caregivers. With the backdrop of fun and festivities for children and their families, this event provides an opportunity to unite thousands from the epilepsy community year after year.

“Epilepsy Awareness Day at Disneyland brings many leaders and families together from the epilepsy and rare syndromes community. Having the time and space to engage in a meaningful way is quite special.” – Laurie Bailey, US Patient Partnership Lead, Corporate Affairs at ��ֳ�

Epilepsy is one of the most common neurological disorders, affecting people of all ages. ��ֳ� is committed to transforming outcomes for people living with epilepsy and rare epileptic syndromes such as LGS. We are honored to share these special and meaningful moments with patients, their loved ones, and the advocacy community leading up to and during Epilepsy Awareness Month. It is a critical reminder of the significant unmet needs that remain and the importance of our work today and tomorrow.

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Epilepsy Awareness Month Epilepsy Lennox-Gastaut syndrome NORD LGS Foundation

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Prioritizing awareness and access for people living with a rare disease

Vanco Vlastimil (��ֳ� S.A.) — Tue, 28 Feb 2023 10:30:46 +0000

Prioritizing awareness and access for people living with a rare disease

Charl van Zyl, EVP Neurology Solutions & Head of Europe/International Markets

Vanco Vlastimi… Tue 28/02/2023 - 11:30

There are 300 million people in the world today living with a rare disease. Over 6,000 rare diseases are characterized by a broad diversity of disorders and symptoms that vary not only from disease to disease but also from patient-to-patient suffering from the same disease. Almost half of these diseases are neurological, and 90% of rare childhood disorders have major neurological effects.

However, with each rare disease affecting so few people, these conditions are often overlooked. The resulting lack of awareness of rare diseases remains a problem, with up to 90% of these conditions considered serious or life-threatening. In addition, although we have made tremendous progress in advancing innovation for rare diseases, 95% of rare diseases still do not have a treatment option, representing a significant unmet need.

More than ever, it’s essential that attention is prioritized on rare diseases.

This Rare Disease Day, we’re joining the global movement to raise awareness and knowledge about rare diseases. We fully support the mission of this important milestone, promoting equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease. For ��ֳ�, these are all driving forces behind our commitment to the rare disease community.

There are so many areas where industry can play a role in helping to create change for people living with rare disease.

Increasing equity for people living with a rare disease in one of our priorities. It’s imperative that those living with a rare disease have equitable access to health, social care, diagnosis, and treatment. As part of our mission to address this, we’re conducting a health economics (HECON) report to better define the burden of illness of generalized myasthenia gravis (gMG) to help address these challenges and help make change for patients.

At ��ֳ�, we strive toward faster clinical trial processes in order to get new treatments out as soon as possible; work on collecting data from rare disease patients so that their “real world” experience is represented and appreciated; involve patient expertise more closely during the development process so we can listen, learn and adapt; plus much more – all with one goal: improving knowledge around these unique conditions while helping relieve some of the pressures they put on individuals, families, healthcare systems, and society alike.

��ֳ� has a growing portfolio – both approved and investigational/early research – in rare diseases including Dravet syndrome, Lennox-Gastaut syndrome, gMG, MOG, TK2d and CDKL5 deficiency disorder, and other rare epilepsies. All these conditions have unique patient populations with their own needs and challenges and will treat them all with the respect and care they deserve.

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Rare Disease Day Patients generalized myasthenia gravis Dravet syndrome Lennox-Gastaut syndrome MOG TK2d CDKL5

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International LGS Awareness Day

Vanco Vlastimil (��ֳ� S.A.) — Mon, 31 Oct 2022 16:02:08 +0000

International LGS Awareness Day

Mike Davis, Patient Value Neurology & Europe/International Solutions

Vanco Vlastimi… Mon 31/10/2022 - 17:02

Throughout my career working with the epilepsy community, I have witnessed firsthand the strength and resilience of individuals and families living with epilepsy.

We can never stop learning and broadening our understanding, and that is why today - International LGS Awareness Day - ��ֳ� is helping raise awareness of the rare epilepsy Lennox-Gastaut Syndrome (LGS) and elevating stories from those directly affected.

For those who are not aware, LGS is a severe, rare epilepsy syndrome that can develop over time, typically starting with seizures around preschool age. People living with LGS experience multiple types of seizures, which are almost always very difficult to treat.

LGS has far-reaching effects beyond seizures, including issues with communication, psychiatric symptoms, sleep, behavioral challenges, and mobility. Nearly everyone with LGS will have developmental delay within five years of diagnosis, and LGS often results in lifelong disability.

We are often told that life with LGS is ‘consistently inconsistent’, and that having a child with LGS can be emotionally isolating, therefore a strong community of support is important - as LGS affects each person and their family differently.

Today, we’re proud to be able to share a glimpse of one family’s daily life.

Please do watch this short video to hear from Lori, a mother of a son living with LGS on her family’s experience, to learn more.

We will be sharing the stories of families impacted by this rare disease today and throughout the year.

Join in this International LGS Awareness Day by helping raise awareness and advocating for those in need, connecting people to the great resources and organizations out there who can help.

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Lennox-Gastaut syndrome LGS epilepsy International LGS Awareness Day

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Strengthening our commitment for people living with epilepsy

Vandenbruaene Nathalie — Wed, 09 Mar 2022 15:41:13 +0000

Strengthening our commitment for people living with epilepsy

Charl van Zyl, EVP Neurology Solutions & Head of Europe/International

Vandenbruaene … Wed 09/03/2022 - 16:41

This week ��ֳ� announced the successful acquisition of Zogenix. The acquisition reinforces ��ֳ�’s sustainable patient value strategy, broadening and building upon our role in addressing unmet needs of people living with specific or rare forms of epilepsy.

Rare forms of epilepsy such as Dravet syndrome, have a significant impact on quality of life and if not identified early and treated appropriately, can lead to an elevated mortality rate than in the general epilepsy population. There is a clear urgency in identifying new solutions for people living with these rarer forms of epilepsy to ensure that they, and their families, have access to the care they need.

Zogenix is a company that is passionate about tackling these challenges and is committed to developing therapies with the potential to transform the lives of patients and their families living with rare diseases, such as Dravet syndrome and Lennox-Gastaut syndrome.

At ��ֳ�, we share this ambition of bringing even greater value for people living with different forms of epilepsy. We have provided solutions that have helped transform the epilepsy landscape and improve the lives of millions of people. However, we understand that much more needs to be done to allow people living with different forms of epilepsy live their best lives.

We are very pleased to reach today’s milestone and to welcome the Zogenix team to the ��ֳ� family. We have a lot of important work ahead of us to deliver on our ambitions, and we look forward to working together to deliver greater value for people living with epilepsy.

See the press release here.

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Zogenix epilepsy Dravet syndrome Lennox-Gastaut syndrome

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Lennox-Gastaut syndrome

Paving a better future for people living with Lennox-Gastaut syndrome

What is LGS?

Why is there a significant unmet need in LGS?

Our commitment to the LGS community

The importance of collaboration

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Epilepsy Awareness Month: Increasing Knowledge, Support and Advocacy

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Prioritizing awareness and access for people living with a rare disease

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International LGS Awareness Day

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Strengthening our commitment for people living with epilepsy

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