innovation

Data-driven federated learning in drug discovery with knowledge distillation

Vandenbruaene Nathalie — Tue, 18 Mar 2025 12:00:52 +0000

Data-driven federated learning in drug discovery with knowledge distillation

Yogesh Sabnis, Global CADD and Annie Delaunois, Non clinical Safety Evaluation

Vandenbruaene … Tue 18/03/2025 - 13:00

We’re proud to announce the publication of joint research on FLuID (Federated Learning Using Information Distillation) in Nature Machine Intelligence. This innovative approach has the potential to reshape how industries like pharmaceuticals collaborate while safeguarding sensitive data.

A key challenge for AI in scientific research is accessing high-quality data for impactful models. Valuable knowledge often remains locked in confidential corporate data silos, despite industries being more open to sharing non-competitive insights. Federated learning allows knowledge sharing while preserving data privacy but has limitations.

In the publication we introduce FLuID (federated learning using information distillation) tailored to drug discovery to maintain data privacy. Validated through public data and real-world collaboration among eight pharmaceutical companies, FLuID addresses domain shift challenges and enhances knowledge sharing. This leads to improved models for biological activity predictions, paving the way for a new generation of models with better performance and broader applicability.

Here’s how it works. Instead of sharing raw data, companies train private, local models and use them to annotate a shared public dataset. These annotations are then combined, creating a powerful blend of insights that organizations can leverage collaboratively. The process ensures complete privacy while producing models that outperform those built from individual datasets.

FLuID has already demonstrated its impact. By collaborating, multiple pharmaceutical companies have improved their ability to predict how chemical compounds interact with the human body, helping drive innovation and support drug safety predictions.

With its privacy-first design and scalable framework, we hope FLuID opens the door to ethical, large-scale collaboration across industries, paving the way for smarter, faster discoveries in fields where data security has traditionally been a barrier.

I invite you to explore this achievement and learn how FLuID is setting new standards for innovation in science and beyond by reading the full publication here.

innovation

60 Likes

Collaboration and innovation drives RealiseD Project to Change the Paradigm for Clinical Trials in Rare and Ultra-Rare Diseases

Andrea_Puletto — Fri, 28 Feb 2025 12:31:57 +0000

Collaboration and innovation drives RealiseD Project to Change the Paradigm for Clinical Trials in Rare and Ultra-Rare Diseases

Marc Vandemeulebroecke, Biometrics & Data Science

Andrea_Puletto Fri 28/02/2025 - 13:31

Imagine a world where every rare disease, no matter how uncommon, gets its moment in the spotlight of scientific innovation. Where the challenges of small patient populations and varied symptoms don't hinder progress but inspire a new approach to clinical studies. This is the mission at the heart of RealiseD, and ��ֳ� are proud to be part of this project which is funded by the Innovative Health Initiative (IHI) and will run until 2029.

With millions of people worldwide living with a rare disease, and many of these conditions being ultra-rare, the need for new treatments has never been more urgent. Yet, the path to developing these treatments is fraught with obstacles, from enrolling participants in clinical studies to navigating fragmented regulatory frameworks. That's where RealiseD steps in, with the aim of transforming the paradigm of clinical studies for rare and ultra-rare diseases.

But how, you might ask, can such an ambitious goal be achieved? The answer lies in collaboration and innovation. RealiseD is not just another research project; it's a comprehensive, collaborative effort to overhaul how clinical studies are conducted for the rarest of diseases. By bringing together experts from every corner of the healthcare ecosystem - academia, regulatory bodies, clinical research institutes and hospitals, patient organisations, and pharmaceutical companies – RealiseD is working to craft new gold standards for clinical trials in rare and ultra-rare diseases.

So, what can we take away from the ambitious mission of RealiseD? It's a reminder that in the face of daunting challenges, collaboration and innovation can light the way forward. It's a call to action for all of us in the healthcare industry to support and participate in efforts that push the boundaries of what's possible. And most importantly, it's a beacon of hope for the millions of people living with rare diseases, a promise that they are not forgotten and that the future holds the promise of new treatments.

The journey of RealiseD is just beginning, but its vision is crystal clear: a world where every rare disease is recognized, researched, and treated. ��ֳ� is proud to stand together in support of this noble mission, because we think that the impact of RealiseD will resonate for generations to come.

To stay updated on the progress of RealiseD and learn more you can visit their new website by clicking here.

innovation

innovation clinical research clinical trials

Comment:

Posted by Andrea Wilkinson , 28 February 2025

So proud to hear of your contribution to this important global initiative to drive changes in EU that we can all learn from! More, More, More!!

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COMING SOON: Hypothesize That! – a new science podcast from ��ֳ�

Vandenbruaene Nathalie — Mon, 24 Feb 2025 13:11:01 +0000

COMING SOON: Hypothesize That! – a new science podcast from ��ֳ�

Scott Fleming, Corporate Communication

Vandenbruaene … Mon 24/02/2025 - 14:11

Hypothesize That! brings together thought leaders, researchers, and visionaries to redefine the future of drug discovery and development. Whether you're an industry professional or a science enthusiast, this podcast promises to spark curiosity and inspire innovation!

Curious about how cutting-edge innovations and bold ideas are reshaping the pharmaceutical landscape? The Hypothesize That! podcast is your gateway to unearthing the trends, theories, and challenges at the forefront of pharmaceutical research and development.

Where science meets conversation

What sets Hypothesize That! apart? Featuring guest appearances by leading voices across the industry, it’s more than a podcast – it's an exchange of ideas to make you think.

What you can expect

About the host
Nicola Hill is an experienced health journalist and TV presenter with more than 30 years of expertise developing a sharp instinct in uncovering compelling stories.

A sneak peek at episodes 1-3

Episode 1: The end of wet labs? How digital is virtualizing pharma research

Russ Altman, Professor from Stanford University and host of the Future of Everything podcast, and ��ֳ�’s Chief Scientific Officer, Alistair Henry interrogate the role of AI in revolutionizing drug discovery and experimentation

Episode 2: Within the next 10 years, will traditional clinical trials be obsolete?

Craig Lipset (Co-Chair of the Decentralized Trials and Research Alliance) and Lewis Millen (Global Clinical Science and Operations Innovation, ��ֳ�) explore the rise of decentralized clinical trials that operate invisibly in participants' daily lives, altering the future of clinical trials

Episode 3: Gene therapy’s future: will patient engagement eclipse science?

Emma Lane (Gene Therapy Patient Engagement Lead, ��ֳ�) and Laurence Woollard (patient advocate and Director of On the Pulse) examine why early and ongoing collaboration with patients might be the key factor driving the success of gene therapies.

Be the first to listen

Hypothesize That! will be available on Spotify and your favorite podcast platforms. Don’t miss the opportunity to stay ahead of the curve in pharmaceutical innovation.

Be sure to follow us on LinkedIn for updates, exclusive content, and a few surprises. The future of pharma starts here – Hypothesize That! is your front-row seat to the conversation.

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Podcast research & development Hypothesize That!

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Driving innovation forward: ��ֳ� unveils new R&D facility

Vandenbruaene Nathalie — Mon, 10 Feb 2025 09:52:39 +0000

Driving innovation forward: ��ֳ� unveils new R&D facility

Luc Uylenbroeck, External Innovation and Operations

Vandenbruaene … Mon 10/02/2025 - 10:52

I am thrilled to announce the start of the construction of a state-of-the-art research & development (R&D) facility at our Braine-l’Alleud Campus. The new facility, known as the Arkelia project is a milestone of our long-term strategy to push the boundaries of science and deliver life-changing solutions for people living with severe diseases worldwide.

Designed to connect seamlessly with the company’s gene therapy center and key neurology research infrastructure, Arkelia will foster collaboration, accelerate advancements in research and development, and drive innovation in manufacturing. With a research focus on neurodegeneration, neuroinflammation, epilepsy, and early-stage development, this facility will strengthen ��ֳ�’s global leadership in pioneering solutions for patients.

Accommodating more than 170 scientists, the facility is built to encourage cross-disciplinary collaboration while leveraging cutting-edge technology and advanced scientific tools to enhance R&D capabilities. More than just a workspace, it will serve as a dynamic ecosystem that fosters scientific creativity and accelerates the development of transformative therapies.

Crucially, Arkelia underscores ��ֳ�’s unwavering commitment to sustainability. Designed to the highest eco-standards, the facility will incorporate energy-efficient systems, renewable energy sources, and sustainable materials to minimize its environmental footprint. By integrating green technologies, we are ensuring that scientific advancement goes hand in hand with environmental responsibility.

This initiative significantly contributes to the growth strategy of the Braine-l'Alleud Campus, reinforcing collaboration between research, development, manufacturing, and supply teams. The facility’s flexible and forward-thinking design will align critical phases of innovation, ensuring accelerated progress while prioritizing sustainability.

Set to become fully operational by 2028, Arkelia marks a significant milestone in ��ֳ�’s sustainable growth journey. It reflects our ongoing dedication to delivering high-impact solutions while upholding our responsibility to the planet.

Stay tuned for more updates as we continue to drive innovation forward at ��ֳ�.

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R&D research & development Arkelia Braine-l’Alleud

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��ֳ� and Ailux Biologics Join Forces to Transform Biologics Research

Andrea_Puletto — Thu, 09 Jan 2025 13:38:36 +0000

��ֳ� and Ailux Biologics Join Forces to Transform Biologics Research

Dan Lightwood, Antibody Discovery and Optimisation

Andrea_Puletto Thu 09/01/2025 - 14:38

At ��ֳ�, our commitment to innovation is driven by one clear objective – to transform the lives of people living with severe diseases. Each partnership we pursue is carefully chosen to not only align with this mission but to amplify it. That's why we are thrilled to announce a groundbreaking collaboration with Ailux Biologics, a division of XtalPi, to propel biologics research into new territory.

This strategic partnership highlights ��ֳ�'s ongoing dedication to addressing unmet medical needs, harnessing cutting-edge technologies, and shaping a future where healthcare solutions are developed faster, smarter, and more effectively.

A Powerful Alliance for Scientific Innovation

Through our partnership with Ailux Biologics, we’ve licensed XtalFold™, an AI-powered biologics platform designed to provide rapid and accurate insights into antibody and antigen structures. By integrating this sophisticated technology into our biologics discovery and optimization workflows, we’re equipping our teams with enhanced capabilities to engineer high-quality therapeutic candidates more efficiently. We believe XtalFold™ has the potential to enhance ��ֳ�’s ability to rapidly and efficiently discover therapeutic antibody candidates and ultimately deliver new medicines to patients.

XtalFold™ sets itself apart by leveraging sequence information alone to predict biomolecular interactions, including the crucial antibody-antigen interface. This streamlined, sequence-driven approach offers exceptional precision, even in complex regions that were challenging to model in the past.

Addressing Unmet Needs Through Technology

With around 70% of immune and central nervous system diseases still classified as having unmet medical needs, accelerating the discovery of effective therapies is critical. XtalFold will allow us to leverage structural insights into the entire antibody discovery and optimisation workflow; allowing us to be more efficient in how we select and engineer antibodies with suitable drug-like properties.

Coupled with ��ֳ�’s robust in-house antibody discovery platforms, this collaboration establishes a dynamic synergy between human expertise and computational power. It’s a blend of innovation and experience that further strengthens our ability to bring meaningful solutions to patients around the world.

Anticipating the Path Ahead

This isn’t just a collaboration to benefit the present; it’s a strategic move that looks towards the future of biologics development. ��ֳ� and Ailux Biologics will continue to explore the full potential of AI in discovery processes, aiming to deliver milestones that redefine therapeutic solutions. By adopting state-of-the-art platforms, we expect to not only accelerate drug discovery but foster an environment where innovation thrives.

We’re proud of what this partnership signals not just for ��ֳ� but for patients around the globe. Together with Ailux Biologics, we will continue to challenge the boundaries of science, and work to open doors to treatments that were once unimaginable. This is only the beginning, and as we move forward, our vision remains unwavering – transforming lives, one discovery at a time.

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innovation Our Science innovation medicines initiative

Comment:

Posted by Cecilia, 30 January 2025

Amazing news

192 Likes

What does the future look like for rare genetic epilepsies?

Andrea_Puletto — Fri, 06 Dec 2024 10:21:24 +0000

What does the future look like for rare genetic epilepsies?

Christian Wolff, Epilepsy Discovery Research

Andrea_Puletto Fri 06/12/2024 - 11:21

Research into rare genetic epilepsies is advancing rapidly, with multiple promising clinical developments that are underway. Across the industry, considerable efforts are being made to better care for people living with rare or treatment-resistant epilepsies through innovative science. At ��ֳ�, this means building a comprehensive understanding of the patient needs and the underlying causes of epilepsies, and seeking new ways to modify disease processes to improve outcomes.

Understanding the underlying disease mechanisms

Driving research into rare and treatment-resistant epilepsies requires us to combine our deep heritage in epilepsy with the latest technological innovations. By better understanding the molecular signatures and pathways that form the root causes of these complex diseases, it is opening up opportunities to target the underlying mechanisms that cause epilepsies.

KCNT1-related epilepsies are a group of rare epilepsies caused by a variation in the KCNT1 gene and include epilepsy of infancy with migrating focal seizures (EIMFS) and sleep-related hypermotor epilepsy (SHE). Most children have severe developmental and intellectual disability, and their seizures are difficult to control. ��ֳ� is collaborating with Praxis Precision Medicines, focusing on potential treatments for KCNT1-related epilepsies. This partnership aims to enhance understanding of the underlying causes of epilepsy, with a focus on exploring potential disease-modifying treatments.

It’s all part of our focus on disease modification, acting at the root cause of a disease rather than just addressing individual symptoms. By carefully observing the whole spectrum of symptoms and understanding of how epilepsies progress, coupled with research into the disease pathobiology, we hope to identify suitable targets for disease modification.

Beyond seizure control

The ultimate goal of our research is to find treatment approaches for people with rare genetic epilepsies who often struggle to find effective therapies and as a result, do not experience freedom from their persistent seizures. However, disease impact goes well beyond the symptomatic control of seizures and to make a meaningful impact on people’s lives we need to think more holistically about epilepsies.

For many people living with epilepsies, seizures are not always the primary or most impactful symptom they face in everyday life. Cognitive impairments, developmental delays, psychiatric conditions, and detrimental impacts on quality of life frequently accompany rare epilepsies yet are often underdiagnosed or inadequately treated. It’s essential that we consider these non-seizure outcomes associated with epilepsy as we seek to discover new solutions that look to improve quality of life holistically.

Several reports presented during this year’s American Epilepsy Society Congress (AES) focused on the relationship between sleep and epilepsy. A retrospective observational analysis found sleep apnea comorbidity is an important and potentially actionable factor associated with increased mortality in children and young adults with severe epilepsy. Traditionally sleep is assessed in a clinical setting using an elaborate electrical signal setup (EEG, ECG, EMG, EOG) * and respiration measurement. One study presented at AES found that sleep can be reliably assessed from a behind-the-ear EEG montage in an automated way in both healthy subjects and patients with Dravet Syndrome. The ability to assess sleep in a non-intrusive way has great potential to detect sleep-related co-morbidities associated with Dravet syndrome.

By better understanding the holistic challenges that the community faces we can drive advancements in how rare epilepsies are treated, with the full perspective of the patient and their family in mind.

A glimpse into the future

As we look to the future, it’s vital that we continue to raise awareness of rare epilepsies, partly due to the vast number of patients undiagnosed, but also to create a more supportive environment for all those living with these debilitating conditions.

The future of epilepsy research, particularly for rare genetic epilepsies, is promising. By focusing on new modalities, developing novel disease-modifying treatments, addressing comorbidities, and leveraging advanced technologies, we hope to find a way to not only control seizures but also improve overall quality of life for those living with epilepsies and their families. As our understanding of the epilepsy spectrum grows, so does the potential to explore new approaches that could change the course of rare epilepsies.

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

* EEG (Electroencephalogram) measures electrical activity in the brain. ECG (Electrocardiogram) monitors heart rhythms and electrical activity. EMG (Electromyography) assesses muscle response. EOG (Electrooculography) tracks eye movements.

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innovation Our Science Rare Disease

Comment:

Posted by Sarah Drislane, 6 December 2024

The KCNT1 Epilepsy Foundation is grateful for your continued work in understanding and developing treatments for KCNT1 -related disorders and other DEEs!

153 Likes

��ֳ� Belgium: A global hub of healthcare innovation

Andrea_Puletto — Wed, 20 Nov 2024 14:22:27 +0000

��ֳ� Belgium: A global hub of healthcare innovation

Jiri Keirsse, Public Private Partnerships & Innovation Strategy

Andrea_Puletto Wed 20/11/2024 - 15:22

Recognized by the European Innovation scoreboard, Belgium has positioned itself as a powerhouse in healthcare and pharmaceutical innovation, with a unique blend of academic rigor and industry expertise driving its success. This thriving ecosystem is characterized by strong collaboration between leading research institutions and pharmaceutical companies, setting Belgium apart on a global level. The partnership between ��ֳ� and KU Leuven, a renowned research institution, is a prime example of the country's collaborative spirit. With the potential to span early discovery to clinical proof of concept we are working to advance healthcare innovation, addressing unmet patient needs, and solidifying Belgium’s influence in the global healthcare landscape.

Belgium’s academic landscape is home to institutions like KU Leuven, which are not only centers of education but international communities where innovative research forms the basis of all their academic programs – they act as a catalyst and connector for innovation and scientific discovery. Like ��ֳ�, KU Leuven is at the forefront of cutting-edge research. They play a pivotal role in translating academic insights into practical healthcare applications with a keen focus on moving from ‘science to business’. That makes them a great partner for ��ֳ�; from unlocking the secrets of chemicals, cultivating the promises of pharmaceuticals and expanding into biologics, peptides and gene therapy, we at ��ֳ� are on a mission to continuously innovate. We also recognize that we cannot solve the world’s healthcare challenges alone, and so we know the value gained from collaboration across disciplines, geographies and stakeholders. Innovation has no boundaries, and real breakthroughs will result from the use of new technologies and trust-based collaboration and partnerships.

At the core of Belgium’s healthcare success is its collaborative ecosystem. The partnership between ��ֳ� and KU Leuven exemplifies how academia and industry are incentivized to work hand in hand to push the boundaries of knowledge and innovative science. The culture of collaboration is stimulated by open conversations, translating from the world of academia to drug development. Building a connection based on similar motivations develops an organic relationship between the two parties, and in turn creates the best environment for collaboration and partnerships.

The healthcare innovations born from Belgium's collaborative efforts have far-reaching impacts beyond its borders. Developments made in Belgium are being adopted worldwide, driving improvements in patient outcomes and setting new standards in the pharmaceutical industry. As the healthcare landscape continues to evolve, Belgium remains well-positioned to spearhead change in innovation. The future promises even stronger academic-industry collaborations, with emerging trends pushing the boundaries of scientific discovery. Belgium’s long-term vision as a hub of healthcare innovation is anchored in its commitment to fostering partnerships that fuel ongoing advancements. Through this sustained collaboration, Belgium will continue to play a vital role in shaping the future of global healthcare.

Belgium’s healthcare innovation ecosystem, driven by collaborations between ��ֳ� and KU Leuven, is a powerful force in the global pharmaceutical industry. The country’s continued commitment to partnership and innovation ensures its influence will only grow, leading to new breakthroughs and closing the gap of unmet needs globally.

We recently spoke with Bart Geers, an Investment Manager from KU Leuven, Research & Development about innovation and the need for collaboration and partnerships across academia and the pharmaceutical industry. Watch the video to learn more.

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Science innovation our company

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Advancing rheumatology research: ��ֳ� at ACR Convergence 2024

Borysiuk Viktor (External) — Thu, 14 Nov 2024 13:45:12 +0000

Advancing rheumatology research: ��ֳ� at ACR Convergence 2024

Snauwaert Adriaan, Immuno Global Communication

Borysiuk Vikto… Thu 14/11/2024 - 14:45

The American College of Rheumatology (ACR) Convergence is a highly anticipated event in the calendar year, bringing together medical experts and pharmaceutical industry professionals who share our commitment to improving patient outcomes in rheumatology. This year, ACR Convergence 2024 promises to be a dynamic platform with presentations on the latest innovations and discussions on emerging topics and trends. ��ֳ� will be showcasing our commitment to addressing the treatment gaps and delivering pioneering therapeutic options to those living with rheumatic diseases.

��ֳ� will present new long-term data on managing rheumatic diseases, specifically in psoriatic arthritis (PsA) and axial spondyloarthritis (axSpA). We are also proud to share new data in rheumatoid arthritis (RA) and systemic lupus erythematosus (SLE). These data demonstrate meaningful improvements in clinical and patient-reported outcomes, showcasing the potential impact that innovative solutions can have on patient care and long-term health outcomes. Through our scientific expertise, patient-centric mindset, and diverse partnerships we aim to elevate care for people living with rheumatic diseases, supporting them in living as free as possible from challenges and uncertainty.

We cannot achieve this alone. By fostering collaborations with our partners and patients, we can draw on real-world experience and insights to guide our efforts in shaping the future of rheumatology.

Earlier this year, we captured conversations with ��ֳ� colleagues and industry experts, emphasizing the importance of collaboration in driving progress in rheumatology. These discussions reinforced our shared commitment to innovative, patient-centered care to reduce the treatment gap in conditions like PsA, axSpA and SLE.

Watch below to learn more.

innovation

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Moms Really Can Do It All - Meet Tracy: a Mom, Caregiver, Neuroscientist, and Advocate in the Rare Disease Community

Borysiuk Viktor (External) — Fri, 25 Oct 2024 11:32:26 +0000

Moms Really Can Do It All - Meet Tracy: a Mom, Caregiver, Neuroscientist, and Advocate in the Rare Disease Community

Becky Malone, US Communication

Borysiuk Vikto… Fri 25/10/2024 - 13:32

Each of us, throughout some stage in our life, will likely take on the role of a caregiver – of a child, a parent, or even a spouse or friend. Once we take that step, we are notorious for not taking care of ourselves in the same way we provide for others. In my own experience caring for a daughter living with a severe, life-threatening and rare form of epilepsy called Lennox-Gastaut syndrome (LGS), I am all too familiar with the mental burden that caregivers carry with them and the overall tendency to put our own needs last. It can be easy to lose yourself in everyday moments when your time and mental energy are so singularly focused on someone else’s care. Supporting a person who you love not only takes precedence above all else but is reinforced by the rewarding feelings it brings. At the same time, daily challenges can add up, slowly chipping away at your own quality of life and self-care.

LGS is a form of developmental and epileptic encephalopathy (DEE) that typically develops in childhood and results in frequent and difficult-to-treat seizures. People living with LGS experience a variety of complications, including frequent and severe seizures, significant behavioral and developmental delays, movement and balance issues, and sleep difficulties. Even more devastating, they are 24 times more likely to die of premature mortality, including sudden unexpected death in epilepsy (SUDEP). These ongoing challenges can create significant obstacles for both patients and their caregivers, as the condition often requires consistent and lifelong management to mitigate the dangerous side effects and detrimental impacts on quality of life.

I distinctly remember the terrifying moment I woke to the sound of my 2-year-old daughter, Savannah, making choking noises. Rushing in, we found her convulsing in her crib. I’ll never forget the words of the paramedic that night who said, ‘Her airway is clear, but what you just described sounds just like a seizure.’ That began our difficult journey with epilepsy.

By age 3, Savannah was experiencing multiple types of seizures and had to wear a helmet. By age 4, she began to have seizure clusters that would last for hours without drug intervention. By age 5, delays in her development were becoming apparent, and she was finally diagnosed with LGS. Upon her diagnosis, we were told by doctors that Savannah would never graduate from high school or live to see adulthood. The scenarios that went through my mind were unimaginable. But what I wish I had known at that time was how incredible Savannah was going to be – her fighting spirit, hilarious quips, and sassy attitude. I didn’t anticipate all of the amazing people our family would meet along the way, including other caregivers going through the same experiences. 

Over the years, I've now witnessed Savannah endure more than 40,000 seizures, a staggering figure even for a medical professional, let alone a mother. Every morning, I check that Savannah is breathing, a routine that underscores that constant feeling of being on guard 24/7 to maintain her safety. Even with meticulous care, this sense of caution never fades.

During our family’s early years experiencing seizures and utter confusion, I immersed myself in learning all I could about LGS, eventually pursuing higher education to understand the research I was reading. As my love for science grew, I juggled late nights of studying and raising my children, and my classmates became a new support system. After 12 challenging years, I earned my Ph.D. in neurobiology, driven by the hope of improving the lives of children like Savannah. 

My own research eventually uncovered the mechanism behind Savannah's epilepsy, allowing me to partner with our doctor to find a treatment that works for her. Now, Savannah is 30 years old and sassier than ever – I often think that she is one of the “lucky” ones. Yet, the transition to adulthood has been a struggle, especially knowing that currently, no family support programs exist for long-term adult care planning or for the transfer of primary care for those living with rare epilepsy syndromes. There is a significant need for support to facilitate future medical, legal, and financial planning, ensuring caregivers have access to support at every step of the journey. In fact, data from a survey, conducted by ��ֳ� of parents and adult siblings of people with rare epilepsy syndromes, found that only 22% believed they had adequate access to long-term care planning information. They shared frustration in finding support and resources and concern about how their loved ones will be supported as they transition into adulthood.

The frustrations felt by the community drive the work we do at the LGS Foundation. Alongside the efforts of companies like ��ֳ�, we now have new ways to connect as a community, raising awareness about the challenges we face as caregivers each day and offering one another support.

In 2018, ��ֳ� partnered with the LGS Foundation and Dravet Syndrome Foundation to compile the Siblings Voices Survey to assess how children adapt to growing up with siblings living with a rare epilepsy syndrome. Grounded in this community insight, the VIP Siblings Project supports people who have a brother or sister with a rare epilepsy syndrome. These siblings are often unselfish, dedicated, and able to see past the challenges, exhibiting understanding and compassion beyond their years. The education provided by the program helps families not only make better informed decisions about their loved ones’ care, but also have more space to care for themselves.

Having the opportunity to collaborate with organizations like ��ֳ� allows us to expand our mission at the LGS Foundation even further, surrounding patients and caregivers through every step of their care journey, including the transition into adulthood, and helping them navigate the moments in their lives that matter most. Ultimately, it is those moments of vulnerability, fear, and uncertainty where families like ours who experience seizures need this support.

While it has been devastating to watch what LGS has done to my child, as both a mom and a neuroscientist, I understand, in a profound way, that we must never give up the fight to stop seizures – and we never will. The real war on LGS is being waged at home, in the trenches as I call it, by each family.

To other caregivers, know you are not alone. Know that it is okay to have hope. It is hope that drives my family and my work at the LGS Foundation. With partners like ��ֳ�, we are one step closer to offering real solutions for LGS families as together, as we drive forward our relentless pursuit of a seizure-free life.

Tracy’s story was recently shared on Today.com.

Find out more about LGS here

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LGS LGS Foundation Neurology

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Delivering Medicines and Innovation: ��ֳ� & ClearPoint Neuro’s Partnership

Andrea_Puletto — Fri, 18 Oct 2024 13:58:29 +0000

Delivering Medicines and Innovation: ��ֳ� & ClearPoint Neuro’s Partnership 

Audrey Sanselme, External Manufacturing Operations Lead

Andrea_Puletto Fri 18/10/2024 - 15:58

For ��ֳ�, innovation is not merely a buzzword; it's a relentless pursuit of excellence, improvement, and discovery. It encapsulates our drive to address unmet needs, to fill gaps, and to overcome weaknesses that persist in modern medicine. The work we do is about making tangible advancements that enhance the way we approach healthcare, offering new hope and possibilities to patients worldwide. This pursuit is deeply rooted in the belief that we can, indeed, build a better future.

However, its crucial to acknowledge that complex tasks should not always be tackled alone. There's a vast world of knowledge and expertise out there, and sometimes, the best ideas can come from outside our organization. Open collaboration and the willingness to engage with others, to listen, and to learn, are foundational to achieving breakthroughs in medical science.

Partnerships, such as the collaboration between ClearPoint Neuro and ��ֳ�, exemplify how cross-disciplinary teams can come together and harness collective creativity, intelligence and skills. The work we are doing with ClearPoint Neuro sees us partner on drug delivery platforms for our gene therapy portfolio. Over the past year, they have invested heavily in expanding their biologics and drug delivery team, and we believe they are a strong strategic fit for ��ֳ� as they too are a company dedicated to innovation in the neurology space with a unique portfolio of navigation and drug delivery tools.

The power of collaborations like this is that we can hear the perspectives and insights of others - which is a powerful catalyst for advancement. By actively listening, we can open the door to a wealth of ideas and solutions that may have otherwise gone unnoticed, enriching our own thinking process. This collaborative approach can not only amplify your impact but also improve your results, as it fosters an environment where diverse viewpoints and expertise converge to solve complex challenges. When you work alongside other people and teams, they bring skills and knowledge that you may not possess, creating a synergy that elevates your capabilities and drives success. This collective effort builds a foundation for sustainable progress and innovation.

As we all navigate through our professional journeys, let's not forget the power of collaboration and the endless possibilities that innovation holds. Whether it's finding more efficient processes, developing new products, or even enhancing team dynamics, the principles of innovation apply across the board. So, the next time you're faced with a challenge that seems insurmountable, remember the story of ��ֳ� and ClearPoint Neuro. Think about how you can apply the essence of partnerships in your work. Who knows? You might just be on the brink of the next big breakthrough.

Find out more about our passion for innovation and collaboration here.

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Data-driven federated learning in drug discovery with knowledge distillation

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Collaboration and innovation drives RealiseD Project to Change the Paradigm for Clinical Trials in Rare and Ultra-Rare Diseases

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COMING SOON: Hypothesize That! – a new science podcast from ��ֳ�

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Driving innovation forward: ��ֳ� unveils new R&D facility

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��ֳ� and Ailux Biologics Join Forces to Transform Biologics Research

A Powerful Alliance for Scientific Innovation

Addressing Unmet Needs Through Technology

Anticipating the Path Ahead

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What does the future look like for rare genetic epilepsies?

Understanding the underlying disease mechanisms

Beyond seizure control

A glimpse into the future

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��ֳ� Belgium: A global hub of healthcare innovation

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Advancing rheumatology research: ��ֳ� at ACR Convergence 2024

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Moms Really Can Do It All - Meet Tracy: a Mom, Caregiver, Neuroscientist, and Advocate in the Rare Disease Community

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Delivering Medicines and Innovation: ��ֳ� & ClearPoint Neuro’s Partnership

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innovation

Data-driven federated learning in drug discovery with knowledge distillation

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Collaboration and innovation drives RealiseD Project to Change the Paradigm for Clinical Trials in Rare and Ultra-Rare Diseases

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COMING SOON: Hypothesize That! – a new science podcast from ������ֳ�

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Driving innovation forward: ������ֳ� unveils new R&D facility

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������ֳ� and Ailux Biologics Join Forces to Transform Biologics Research

A Powerful Alliance for Scientific Innovation

Addressing Unmet Needs Through Technology

Anticipating the Path Ahead

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What does the future look like for rare genetic epilepsies?

Understanding the underlying disease mechanisms

Beyond seizure control

A glimpse into the future

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������ֳ� Belgium: A global hub of healthcare innovation

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Advancing rheumatology research: ������ֳ� at ACR Convergence 2024

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Moms Really Can Do It All - Meet Tracy: a Mom, Caregiver, Neuroscientist, and Advocate in the Rare Disease Community

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Delivering Medicines and Innovation: ������ֳ� & ClearPoint Neuro’s Partnership

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COMING SOON: Hypothesize That! – a new science podcast from ��ֳ�

Driving innovation forward: ��ֳ� unveils new R&D facility

��ֳ� and Ailux Biologics Join Forces to Transform Biologics Research

��ֳ� Belgium: A global hub of healthcare innovation

Advancing rheumatology research: ��ֳ� at ACR Convergence 2024

Delivering Medicines and Innovation: ��ֳ� & ClearPoint Neuro’s Partnership