epilepsy

Advancing neurodegenerative disease research at AD/PD™ 2025 International Conference on Alzheimer’s and Parkinson’s Diseases and related neurological disorders

Andrea_Puletto — Wed, 02 Apr 2025 08:53:07 +0000

Advancing neurodegenerative disease research at AD/PD™ 2025 International Conference on Alzheimer’s and Parkinson’s Diseases and related neurological disorders

Alexander Klein, Global Medical Neurodegeneration

Andrea_Puletto Wed 02/04/2025 - 10:53

At the AD/PD Congress, one of the leading global events for advancing science in Alzheimer’s and Parkinson’s diseases, we are reaffirming our commitment to tackling the challenges of these devastating neurodegenerative diseases. The conference provides an invaluable platform to connect with the scientific community, fuel dialogues that spark innovation, and drive progress in understanding the underlying mechanisms of these complex conditions.

Neurodegenerative diseases like Alzheimer’s and Parkinson’s present an urgent, unmet medical need. These conditions profoundly affect millions of individuals and their families worldwide, often robbing them of independence and quality of life. We recognize that current solutions often fall short in providing comprehensive care, and we are dedicated to researching to bridge these gaps with innovative solutions. To develop solutions effectively, we must first uncover the mysteries behind their onset and progression.

��ֳ�’s Parkinson's research program includes investigating mechanisms to inhibit the propagation of alpha-synuclein – a process believed to underlie the spread of neurodegeneration. Alongside this, we are advancing research into innovative therapies for symptom control, recognizing the diverse needs of each patient throughout their disease trajectory, from early to advanced stages.

We firmly believe that the patient voice is essential in shaping meaningful research and therapies. By prioritizing patient-led initiatives and collaborating directly with those affected, we ensure that our work reflects their needs, experiences, and hopes for the future. The Patient Engagement and Care Progression Research (PECPR) initiative, established in 2021 is a collaborative effort to bring the patient community into the heart of early research and clinical development. The initiative strives to improve patient outcomes by working together on a patient-centered research model, embedding patient involvement throughout ��ֳ�’s Parkinson’s drug development portfolio, and fostering global collaboration to advance Parkinson’s research.

In Alzheimer's, we're hoping to find therapies that can slow the progression of the disease, and recent data from our development program is also on show at AD/PD. Alzheimer’s disease occurs when harmful plaques and tangles comprised of β-amyloid and tau protein build up in the brain, disrupting its function and leading to cognitive decline and dementia.

By progressing the science, working together and listening to the patient voice, we aim to move closer to a world where no family has to face the burden of neurodegenerative disease alone. To every scientist and researcher who joined us at AD/PD — thank you. Your dedication and ideas inspire hope and progress. Together, we are working towards a better future in neurodegenerative science, for patients now and in the future.

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Innovating in neurology: ��ֳ�'s commitment shines at AAN 2025

Andrea_Puletto — Wed, 02 Apr 2025 08:31:25 +0000

Innovating in neurology: ��ֳ�'s commitment shines at AAN 2025

Donatello Crocetta, Global Rare Disease＆Rare Medical

Andrea_Puletto Wed 02/04/2025 - 10:31

As we prepare for the American Academy of Neurology (AAN) congress, we're excited to showcase ��ֳ�'s dedication to transforming care for individuals living with neurological conditions. The AAN annual meeting isn't just an event; it's a gathering of the brightest minds in neurology, where breakthroughs are shared, and challenges are tackled head-on.

A focus on valuable solutions

At ��ֳ�, our passion in neurology is deeply rooted in our history. We have always strived to push the boundaries and redefine what is possible in neurological care. From creating a meaningful impact for conditions like generalized Myasthenia Gravis (gMG) to developing solutions for rare epileptic syndromes such as Dravet syndrome (DS) and Lennox-Gastaut syndrome (LGS), ��ֳ� has consistently led with innovation and compassion. Our research explores the effect of these conditions on quality of life, not just for patients but also for their families, paving the way for better disease management and, ultimately, better lives.

Showcasing innovation at AAN

Among the 24 abstracts accepted for the AAN congress, we are presenting new late-stage clinical trial findings that support the efficacy and safety of our therapies in epilepsy; insights from a new international patient registry for gMG; and findings that progress our understanding of the disease course of TK2d.

��ֳ� is proud to host its inaugural US Rare Disease Connect in Neurology (RDCN) Annual Summit at the 2025 American Academy of Neurology (AAN) Annual Meeting to provide a forum for needs-driven medical education for the generalized myasthenia gravis community (gMG). This event is being held exclusively for healthcare providers who are involved in patient care. RDCN is an ongoing global learning program connecting a community of experts committed to delivering excellence for people living with gMG. The RDCN network is expanding to the US, specifically with the goal to foster collaboration for comprehensive gMG care.

Our commitment to science and care

First and foremost, ��ֳ�’s presence at AAN reflects our unwavering commitment to collaboration with the scientific, medical, and patient communities. We believe that engaging directly with those who live with these conditions, their caregivers, and healthcare providers allows us to tailor our strategies and focus on what truly matters.

Our commitment to collaboration and leveraging real-world insights is central to our approach as we strive to create a future where every person with a neurological condition can achieve optimized care and management. Together, we can drive change and shape a brighter future in the field of neurology, ensuring that our efforts translate into meaningful improvements for those who rely on our innovations.

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innovation epilepsy neurology

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More Than You Can Imagine: Shedding Light on the Burden of Rare Epilepsies

Andrea_Puletto — Mon, 10 Feb 2025 09:50:16 +0000

More Than You Can Imagine: Shedding Light on the Burden of Rare Epilepsies

Andrea Wilkinson, Global Epilepsy & Rare Syndromes

Andrea_Puletto Mon 10/02/2025 - 10:50

When we think of epilepsies, the most common thing that comes to mind is seizures. While seizures remain the hallmark symptom of DEEs (Developmental and Epileptic Encephalopathy) such as Dravet syndrome, Lennox-Gastaut syndrome and CDKL5 deficiency disorder, patients live with additional comorbidities that often go unnoticed but which have a profound and multifaceted impact on their lives. These rare conditions are associated with a host of physical, cognitive and behavioral challenges, taking a significant toll not only on individuals but also on caregivers and families, shaping every aspect of their daily lives.

With International Epilepsy Day on 10 February 2025, followed closely by Rare Disease Day on 28 February, themed ‘More than you can imagine’, it’s an opportune time to shine a light on the non-seizure burdens that these conditions are accompanied by, as well as the impact they have on both patients and their loved ones.

Looking beyond seizures

Dravet syndrome (DS), Lennox-Gastaut syndrome (LGS) and CDKL5 deficiency disorder (CDD) are all rare forms of epilepsy classified as developmental and epileptic encephalopathies (DEEs). Living with these syndromes or conditions is far more complex than managing seizures alone, involving comorbidities that impact cognitive, emotional, and physical well-being. For instance, people with DS often contend with developmental delays, communication difficulties, and mobility issues such as a crouched gait.1 LGS is associated with profound intellectual disabilities and severe behavioural challenges such as aggression or hyperactivity, and CDD can result in musculoskeletal problems like scoliosis, lack of ability to develop speech, and delays or failure to achieve both gross and fine motor skills.

These DEEs don’t end with the individual — they affect the quality of life of families and siblings, caregivers and their broader support system, causing a ripple effect that touches every facet of living.

Anxiety, constant vigilance, chronic sleep disruptions caused by night-time seizures, and the strain of navigating complex healthcare systems can leave families feeling overwhelmed. Caregivers often report high levels of emotional stress and information overload, particularly following diagnosis when their need for specialty healthcare and support is especially high. Furthermore, the unrelenting nature of evolving symptoms, compounded by frequent medical appointments and therapy sessions, can make day-to-day life exhausting and isolating.

Although people’s experiences of living with a DEE will be unique, there are some commonalities that may help to direct future research pursuits. For example, unpredictable seizure activity, irregular sleep patterns and disrupted behavior have all been reported by caregivers as negatively impacting quality of life, leading their loved ones to temporarily lose communication abilities or other activities of daily living. Gaining a better understanding of the disruptive nature of rare epilepsies, and the symptoms that matter most to patients and their families, will help researchers to prioritize areas of scientific focus and improve outcomes.

Working together to address the non-seizure burden

At ��ֳ�, we firmly believe that improving care for people living with epilepsy means addressing both seizure and non-seizure-related outcomes as well as survival of these complex conditions. This requires a holistic approach, with research that expands on current disease understanding, combined with initiatives that promote earlier diagnosis, enhance treatment innovation, and strengthen support systems. Together, we must foster greater recognition of rare epilepsies, prioritizing both medical and non-medical needs to enhance both patient and family outcomes.

‘More Than You Can Imagine’ – A theme to remember

The 2025 theme of Rare Disease Day is a timely reminder that while rare conditions like DS, LGS and CDD may be classified under the umbrella of “epilepsy”, their complexities extend far beyond seizures. Recognizing these challenges – and addressing them – could change what is often an overwhelming diagnosis into a life supported by compassionate resources and initiatives.

We invite you to help us increase understanding of the broader impacts of epilepsy. Whether it’s by engaging with advocacy organizations, supporting caregivers, or simply listening to the experiences of those affected, we can all contribute to building a world where no one feels unsupported in their epilepsy journey. Because when you look beyond seizures, you’ll find stories of resilience, expert voices longing to be heard, and an urgent need to bridge gaps in treatment and care. Together, we can inspire more comprehensive care models that look beyond seizures to encompass the broader spectrum of challenges that rare epilepsy communities face.

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neurology epilepsy TK2d

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��ֳ�’s commitment to understanding Sudden Unexpected Death in Epilepsy

Vandenbruaene Nathalie — Wed, 16 Oct 2024 10:42:44 +0000

��ֳ�’s commitment to understanding Sudden Unexpected Death in Epilepsy

Andrea Wilkinson, Patient Engagement, Epilepsy & Rare Syndromes

Vandenbruaene … Wed 16/10/2024 - 12:42

Sudden Unexpected Death in Epilepsy (SUDEP) occurs when a person living with epilepsy dies suddenly and prematurely for no known obvious reason. It is a leading cause of death in people with epilepsy and represents an unimaginable outcome for anyone living with epilepsy and their loved ones. Discussing SUDEP is challenging, yet addressing this tough subject reflects the expressed needs of individuals affected by epilepsy.

SUDEP Action Day on October 16 is dedicated to raising awareness of the risk of sudden death in epilepsy and aspires to stop preventable deaths. A time when epilepsy organisations across the world come together with a singular purpose: to encourage all healthcare providers, individuals with epilepsy and their families to actively engage in conversations about minimizing SUDEP risks and participating in shared decision-making. The benefits of shared decision-making include improved decision quality, empowering patients to make more informed choices and better treatment consistency.

For ��ֳ�, SUDEP Action Day is aligned with our mission to advance understanding around epilepsy, improve awareness, and elevate the unmet needs of patients and their families. Under this year’s theme of #OurRisksOurRights, we support the goal that every person living with epilepsy should know their SUDEP risk. Integral to this is early epilepsy diagnosis, access to plain language information, medication adherence, updated emergency seizure action plans and the need for improved care coordination.

Understanding SUDEP risk
While no one knows exactly what causes SUDEP, researchers are investigating several possibilities, like the effect of seizures on the heart, the brain and breathing. Certain factors can increase the likelihood of SUDEP, such as frequency of generalized tonic-clonic seizure (GTCS), nocturnal seizures, medication adherence and/or failure to adequately control treatment-resistant seizures.

According to the International League Against Epilepsy, optimizing seizure control, especially GTCS, is the most important measure in reducing a person’s risk of SUDEP.5 However, despite currently available antiseizure medications, 1 in 150 people with uncontrolled seizures die from SUDEP every year. Some people with rare and complex epilepsies continue to experience frequent and uncontrolled seizures and remain at a higher risk of SUDEP.

For example, children with Dravet syndrome are 15 times more likely to die suddenly. Those with Lennox-Gastaut syndrome have a 24 times greater likelihood of premature death compared to individuals with other childhood epilepsies. Emerging research estimates that SUDEP rate is 2.8 per 1,000 person-years.

It is equally shocking to learn that the risk of early death and SUDEP is higher among lower income groups. In fact, people with epilepsy who are in poor health or live on a low income tend to live about 17 years less than average and this is especially true for young and middle-aged adults.

��ֳ�’s commitment to SUDEP
At ��ֳ�, we are aligned with the patient and healthcare community’s desire to reduce preventable deaths from epilepsy by investing in research partnerships, new technologies and championing disease awareness.

SUDEP occurs most often at night or during sleep, leaving many unanswered research questions. ��ֳ� supports Neurava, a medical device start-up that has developed a first-of-its-kind device work around the neck and bicep at night which has the potential to save lives by identifying key biological signals related to epilepsy, tracking seizures and impending SUDEP risk.

Global clinical guidelines recommend counseling people with epilepsy (PWE) on sudden unexpected death in epilepsy (SUDEP). ��ֳ� proudly collaborated with the Child Neurology Foundation alongside Partners Against Mortality in Epilepsy and 20 other organizations to develop the Clinical Toolkit for Preventing Epilepsy Deaths. The toolkit focuses on behavior change by offering health providers and patients tips for on how to talk about mortality risk factors, preventative measures, and treatment options.

Looking ahead
As we advance our understanding of human biology and neurological diseases, we aim to drive innovation in epilepsy alongside clinicians, academics and patient communities. By specifically targeting the mechanisms underpinning SUDEP, we hope to identify the causes and potential biomarkers of SUDEP and reduce the major risk factors for this devastating outcome.

On SUDEP Action Day, we stand with the community and encourage everybody to raise awareness of the risks of sudden death in epilepsy. 

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Sudden Unexpected Death in Epilepsy SUDEP epilepsy

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Broadening global access to epilepsy treatment: an update from Rwanda

Andrea_Puletto — Tue, 08 Oct 2024 08:55:08 +0000

Broadening global access to epilepsy treatment: an update from Rwanda

Tim Verfaille, Social Business Operations

Andrea_Puletto Tue 08/10/2024 - 10:55

I am proud to announce a significant milestone in our mission to broaden access to antiseizure medications in low- and middle-income communities: Levetiracetam ��ֳ� 500 mg is now publicly available and reimbursed for Rwandese people with epilepsy who need this treatment, going a step further after its funding by private insurance schemes since May.

Nearly 80% of people with epilepsy live in low- and middle-income countries (LMIC), where treatment gaps exceed 75% in most low-income countries and 50% in most middle-income countries. Epilepsy remains an important cause of disability and mortality in underserved areas, with many lacking adequate treatment due to constraints such as limited healthcare, unequal resources, a lack of access and awareness as well as stigmatization.

As a company with a rich heritage in epilepsy, with over three decades of expertise in epilepsy research and development, we want to play our part to contribute to possible solutions that address unmet medical needs of people living with epilepsy. This is why we are implementing new business models and approaches to reach underserved people with epilepsy. As part of our social business roadmap, we aim to enhance access to our generic antiseizure treatments in countries with a high prevalence of epilepsy.

Today’s news marks the first time that one of our solutions against epilepsy, that is on the WHO Essential Medicines List since 2023, is having received a marketing authorization by a regulatory authority and is being made available in a sub-Saharan country by ��ֳ�.

In early 2024, we received confirmation from the Rwanda Food and Drugs Authority that Levetiracetam ��ֳ� 500 mg had been registered and approved for use within the country. This medicine is indicated as monotherapy in the treatment of partial onset seizures with or without secondary generalization in adults and adolescents over 16 years with newly diagnosed epilepsy. It's also indicated as adjunctive therapy of partial onset seizures with or without secondary generalisation in adults, adolescents, and infants from 1 month of age with epilepsy, in the treatment of myoclonic seizures in adults and adolescents from 12 years of age with Juvenile Myoclonic Epilepsy, in the treatment of primary generalised tonic-clonic seizures in adults and adolescents from 12 years of age with Idiopathic Generalised Epilepsy.

Stay tuned for more updates on our commitment to bringing solutions to those who need them most in other underserved communities.

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Rwanda Access epilepsy antiseizure treatments

Comment:

Posted by Ley Sander , 9 October 2024

Well done, ��ֳ�! You need now to do the same for the rest of Sub-Saharan countries.

Comment:

Posted by Teresa Fogelberg, 14 October 2024

this is very good news indeed. Now monitor progress and dont shy away from broading to other African countries. Why not try neighbour countries or Senegal?

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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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LGS Lennox-Gastaut syndrome EEC 2024 European Epilepsy Congress 2024 epilepsy

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Advancements in Epilepsy Research

Andrea_Puletto — Thu, 01 Aug 2024 11:25:23 +0000

Advancements in Epilepsy Research

Liesbeth François, Data and Translational Sciences

Andrea_Puletto Thu 01/08/2024 - 13:25

Although the field of epilepsy research is well-established, we have only just begun to scratch the surface of our understanding of more complex epilepsies. We are entering a period of disruption, where new breakthroughs and the integration of innovative technologies into drug discovery and development show promise in transforming epilepsy care. One area is ‘molecular hallmarks’ – molecular signatures that contribute to the presentation of complex epilepsies.

Discovering ‘molecular hallmarks’

At ��ֳ�, a key area of our research is focused on broadening targets for treatments. In a study published earlier this year, we identified well-known and new gene regulatory networks shared across different refractory epilepsies; we called these ‘molecular hallmarks’.i This research was the culmination of five years of collaborative work that has enabled us to start to advance our understanding of hard-to-treat epilepsies and opened new possibilities for drug-target discovery and development.

‘Molecular hallmarks’ are currently under study by our Early Development team who have mapped out a strategy for further research to potentially make the hallmarks targetable. The research targets include neuronal support and myelination, neuroinflammation and immune response, energy metabolism, and the brain extracellular matrix (ECM).

Targeting complex epilepsies

Epilepsy is more than seizures and we are continuing to uncover the vast complexities of the condition. ‘Molecular hallmarks’, therefore, offer potential additional targets for epilepsy treatments that go beyond seizure suppression, enabling us to target the underlying mechanisms of the most challenging seizure disorders. This shift represents a move away from conventional treatment methods, and into research that focuses potentially disease modifying therapies.

This ‘molecular hallmark’ research is an important part of our epilepsy strategy and provides a data-driven framework for the further identification and intervention of further dysregulated biological pathways.

Ultimately, our goal at ��ֳ� is to develop new treatment options, based on these scientific discoveries, that can attempt to enhance patient outcomes.

The role of computational biology

Epilepsy is not a one-size-fits-all condition. Each person’s experience of living with epilepsy is unique and given what we know so far about the complexity of epilepsies, there is a clear role for computational biology in epilepsy research. Through analysis of the expression profiles of refractory epilepsies, we can start to understand global biological mechanisms that are impacted in refractory epilepsies. Our research continues to drive our understanding of the human pathobiology of different refractory epilepsies to support our aim to identify new disease modifying treatments for patients. This research aims to help us comprehend the mechanisms underpinning epilepsy and enable the development of new therapies for refractory epilepsies.

The future of research

Everything we do starts with people and families living with epilepsies, helping them achieve their ideal and maximize their life opportunities. Looking to the future as we advance our epilepsy research, we recognize that those living with complex epilepsies will continue to rely on chronic, symptomatic anti-seizure medicines, and we continue our research to help improve outcomes with the symptomatic approaches available to patients today. However, we constantly need to push our approaches to secure the best outcome for those we serve. Molecular hallmarks and master regulators provide invaluable insights and open new avenues for precision medicine and new treatments that address the unmet needs of people living with epilepsies.

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epilepsy neurology Neurology & Therapy

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Shaping a better future for women living with epilepsy

Vandenbruaene Nathalie — Wed, 03 Jul 2024 13:56:35 +0000

Shaping a better future for women living with epilepsy

Andrea Wilkinson, Epilepsy & Rare Syndromes Patient Engagement

Vandenbruaene … Wed 03/07/2024 - 15:56

Throughout life, women face numerous societal challenges that accompany the physiological changes that manifest into a unique life story. These physiological transformations range from puberty to menopause and beyond. For many women, the childbearing years are the most profound including contraception, pregnancy, childbirth, and post-pregnancy. Each phase carries opportunities and challenges, and for women living with a chronic disease like epilepsy, this journey can be complex and intimidating.

Lack of information

Women living with epilepsy often navigate the motherhood maze with inadequate information on critical aspects about their anti-seizure medications (ASMs) in birth control discussions, fertility planning, pregnancy, breastfeeding, postpartum and outcomes in the child after in utero exposure to ASMs. This lack of knowledge can cast a shadow of uncertainty over their reproductive journey, forcing too many women to make the difficult choice between managing their epilepsy and planning for a family, with some women deciding against having a family due to the challenges.

We are proactive in empowering women with epilepsy to advocate for themselves in discussions about seizure treatment and family planning. We share plain language summaries of our clinical trials’ results, publish other pregnancy-related research and co-create discussion guides that equip women and healthcare professionals to ask the right questions, at the right time.

Advancing the science

At ��ֳ�, we strongly believe in the importance of understanding and addressing the unmet needs of women during their reproductive journey. We are driven by the idea of doing more to support them during these pivotal years.

��ֳ� was among the first companies to address the lack of data and research for women. Our commitment to understanding and addressing the unique challenges that women living with epilepsy face has inspired us to strive to advance the science, specifically targeting their reproductive years.

Our aim is clear: to empower through information that enables women to make informed decisions about their reproductive and post-partum health care and beyond, and to know the potential impact those decisions could have on their child. We conducted a deep dive into our global safety database to assess the risk of our medications to the fetus as well as pharmacokinetic studies of our anti-seizure medications to check plasma and breast milk concentration during and after pregnancy.

Collaborating for change

For many women with epilepsy, the inability to access pertinent information can lead to a feeling of isolation. To combat this, we have turned our focus towards building connections and sharing knowledge. In our quest to bring about meaningful change, we collaborate with strategic partners and stakeholders on various projects, including:

ConcepTION, a project funded by the Innovative Medicines Initiative (IMI) aimed at reducing uncertainty about the effects of medication used during pregnancy and breastfeeding.
Coalition to Advance Maternal Therapeutics (CAMT), a project spearheaded by the Society for Maternal Fetal Medicine focusing research on pregnancy and lactation.
Feedback on the FDA’s pregnancy safety study framework.
BRIDGE (Better Research, Information and Data Generation for Empowerment), a multidisciplinary group dedicated to closing the information gap necessary for women living with chronic diseases to receive optimal care.
Collaborating with the International Bureau of Epilepsy’s Women and Epilepsy Working Group to bring more information to women living with epilepsy.

Through in-depth research, strategic collaborations, and building awareness, ��ֳ� is laying the foundation for a future where every woman living with chronic disease feels empowered to make informed decisions about her healthcare.

For more information about epilepsy, visit Epilepsy & Rare Syndromes at ��ֳ� | ��ֳ�

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��ֳ� Supports International Dravet Syndrome Awareness Day

Andrea_Puletto — Fri, 21 Jun 2024 10:36:31 +0000

��ֳ� Supports International Dravet Syndrome Awareness Day

Andrea Wilkinson, Global Epilepsy & Rare Syndromes

Andrea_Puletto Fri 21/06/2024 - 12:36

We are proud to recognize and celebrate the dedicated families from around the world who are living with Dravet syndrome as well as those who are raising awareness and fundraising for this rare, challenging, and life-long developmental and epileptic encephalopathy that begins in infancy.

At ��ֳ�, we seek to reduce the isolation faced by so many individuals, families, and caregivers. Through educational awareness, we’re helping to reduce the stigma faced by the Dravet syndrome community and the epilepsy community as a whole.

In recognition of International Dravet Syndrome Awareness Day, we have taken the opportunity to reflect on how ��ֳ� supports those affected by this rare condition and what more still needs to be done to improve patients’ lives.

Advocating for those affected by Dravet Syndrome

We recognize the remarkable work done by the experts in the Dravet Syndrome community, including caregivers, nurses, doctors, therapists, and researchers, to enhance the quality of life for those affected by the condition and their families. Within this community, it is the families living with a diagnosis who are the true experts on their condition, and it is their lived experiences that guide our journey.

We work closely with patient groups and our advocacy partners to ensure that this community influences every aspect of our research as well as our efforts to educate and provide support tools to those affected by the condition. For example, we developed a special episode of ��ֳ�’s Raring to Listen Podcast titled ‘Finding Your Community’ which highlights the importance of these support networks in fighting isolation and improving quality of life. You can also visit the Dravet Syndrome Foundation (US), Dravet Syndrome UK, Fundación Síndrome de Dravet (SP), Dravet Syndrome European Federation, and the Dravet Syndrome Japan websites, just to name a few, to find out more about the activities being undertaken by the community.

Addressing unmet needs

Despite advances in epilepsy research, those living with Dravet syndrome have a mortality rate of up to 20% by the age of 20. Furthermore, less than 10% of people with Dravet syndrome experience freedom from their persistent seizures, even though more than 30 anti-seizure medications are currently available on the market. We recognize that more still needs to be done to address unmet needs, and remain committed to developing transformative therapies that will change the course of epilepsies and help people to live better quality lives. A key part of this is also expanding our research focus beyond seizures to improving non-seizure outcomes, such as the emotional and cognitive aspects of Dravet syndrome, which play a vital role in enhancing the lives of individuals, families, and caregivers.

One example of this is ��ֳ�’s recent collaboration with the Dravet Syndrome Foundation on research to investigate the unique challenges faced by caregivers of recently or newly diagnosed children. We found some encouraging advancements. Notably, 71% of children were diagnosed with Dravet syndrome before their first birthday, at an average of 7 months following symptom onset - a significant stride forward in earlier detection. However, the research also highlighted 29% of children still receive their Dravet syndrome diagnosis between 13 to 34 months of age, a timeframe that must be reduced globally to enable early interventions and improve outcomes.

Post diagnosis, many caregivers feel overwhelmed by information and stressed to find the appropriate healthcare team. This is emphasized by the research which revealed that 71% of families switched specialists within four years of diagnosis, with 51% identifying a need for a Dravet syndrome specialist and 20% citing a need for additional follow-up care. Overall, these findings underline the importance of personal provider-patient relationships that build trust. The research also found that 80% of caregivers relied on trusted patient advocacy groups and resources like Shine forward with Dravet, to better understand patients’ lived experiences and to reduce feelings of isolation.

Looking to the future

Beyond the important research taking place across the epilepsies, progress is needed in addressing stigma. Not only for patients and families living with Dravet Syndrome but for the broader epilepsy community. Supporting increased awareness of these conditions globally is not limited to awareness days, it is central to our day-to-day work. We believe that a big part of this comes from amplifying patient voices and hearing their stories firsthand.

This is why we continue to support transformative projects like "It's All Your Fault, Tyler Price!", a Broadway musical premiering in Los Angeles, California in November that aims to destigmatize epilepsy and raise awareness about people living with epilepsy, or caring for someone experiencing daily seizures. The story follows Jackson, a middle school boy, who is navigating his feelings and emotions as he and his family act as caregivers to his sister Lucy who has epilepsy as well as related learning challenges. By exposing new audiences who know little about these conditions to authentic representations of life with epilepsies, we can begin to address the stigma associated with these conditions.

On International Dravet Syndrome Awareness Day we stand with the Dravet community and encourage everybody to reflect on the importance of doing all we can to support those affected by this condition. To learn more about living with Dravet syndrome, visit our Impacting Dravet Syndrome page.

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Dravet syndrome International Dravet syndrome Awareness Day epilepsy Developmental and Epileptic Encephalopathy

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Innovating in Epilepsy

Andrea_Puletto — Fri, 14 Jun 2024 11:19:04 +0000

Innovating in Epilepsy

Mike Davis, Epilepsy & Rare Syndromes

Andrea_Puletto Fri 14/06/2024 - 13:19

In recent years, epilepsy research has evolved from focusing solely on symptomatic control of seizures to investigating the underlying pathologies, aiming to develop disease-modifying and ultimately curative therapies.

At ��ֳ�, we understand the importance of staying at the forefront of innovation, and prioritizing research and development within the dynamic category of epilepsy - principles that have built our 30-year heritage in this area. To ensure we are a part of this evolution, we need to advance and progress. Our people-first approach focuses on three areas of development:

Driving innovation in science
Partnering with patients to advance the ecosystem
Elevating the standard of care for all people living with epilepsies

We are entering a rapid period of disruption where we need to address multiple unmet needs of specific patient populations through evolving modalities, targets, and care delivery. To achieve this, we need to adopt new approaches that employ emerging technologies and require capabilities beyond anything currently present in the market.

We are focused on the development of an extensive future epilepsy portfolio, made up of targeted, precision medicines, focusing on the entire spectrum of epilepsies. As well as continually improving the outcomes of the symptomatic approaches, available to patients today.

Advancing symptomatic care

Our research focuses on developing a better understanding of the prevention of seizures and the underlying mechanisms of the most challenging seizure disorders. We are advancing distinct solutions across many different epilepsies for specific patient populations, and have several early discovery phase research projects, involving both small molecules and gene therapies, that are currently active.

Our goal is to disrupt this space by advancing solutions across many different domains and dimensions of the epilepsies. This starts with our current products where we continue to research their impact on non-seizure outcomes relating to cognition, behavior, emotional development, and sleep architecture; neurodevelopment delays; corollary links to other neurodegenerative diseases; Sudden Unexpected Death in Epilepsy (SUDEP) and all-cause mortality.

Disease modification

Teams from across ��ֳ� are envisioning a next generation of therapies that will take epilepsy care beyond symptomatic treatments by targeting the underlying mechanisms that lead to both seizure and non-seizure effects of the diseases and syndromes we aim to treat and opening the door to disease modifying and curative solutions. Working together, we are exploring fundamental disease etiologies across the epilepsies, uncovering root causes of monogenic epilepsies, and targeting the pathobiology of structural epilepsies, such as the role neuronal support and myelination, neuroinflammation and immune response, energy metabolism, and the brain extracellular matrix (ECM) play in the refractory complex epilepsies.

The role of AI

Technology and AI are having an increasingly significant role in epilepsy research and development - for instance, to help patients and families better characterize and manage their seizures. Our technology-based partnerships with Eysz and NextSense introduce new ways to track brain activity outside traditional EEG monitoring. Furthermore, our R&D teams continually harness ��ֳ�’s deep institutional knowledge of the pathobiology of epilepsies. Using advanced analytics, we leverage AI resources to strengthen our discovery and development efforts. This includes identifying mechanisms and developing disease models through to prioritizing potential targets.

Broadening access

At ��ֳ�, we believe that all patients who need our treatments should have access to them now and in the future. Health inequities are a challenge in bringing innovations to people living with epilepsies and elevating their standard of care. We’re working to address this through sustainable approaches to reach the historically underserved people of lower-middle-income countries and address their unmet needs. For instance, in Rwanda, we have recently worked with the government to enable those living with epilepsy to have access to ��ֳ� treatment.

Health equity is also about deepening our local connections in the communities where we operate. This starts with understanding how diverse patient groups experience care and treatment, to better understand where social determinants of health may have exacerbated health inequities among historically underserved communities and define targeted approaches.

Future thinking

Looking ahead, we expect to see the continuing emergence of treatment modalities, delivery technologies, and hidden insights into underlying pathobiology. This has the potential to advance the development of disease-modifying solutions and support the progress toward curative medicine options for those living with epilepsies. Ultimately, our goal at ��ֳ� is to continue to innovate across the entire spectrum of epilepsy care – we want to treat the treatable and cure the curable.

innovation

Neurology & Therapy epilepsy neurology

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