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Dive into this week's roundup of epilepsy news, groundbreaking research, and stories. ?? To sign up to our Epilepsy Digest, follow this link: https://lnkd.in/gg6iuCr7

Join PACES, our program designed to enhance self-management, boost confidence, and improve the quality of life for individuals with epilepsy. Explore this and other beneficial programs offered through the Managing Epilepsy Well Network: https://bit.ly/3WBnFL7

Vivli Researcher Spotlight: ?? Check out our newest update, with researcher Dr. Sarah Nevitt, on using Vivli to access #clinicaltrialdata, and possibilities for achieving better control and remission of seizures in people with epilepsy: https://lnkd.in/eSUrwsdQ

In one instant, your life is turned upside down. A small accident, a slight stutter, a mild discomfort proves to be something much bigger. At that point, there is no turning back. On 29th February, Rare Diseases Day helped us remember how #lifesciences and #biotech professionals have a key role to play helping cure rare diseases. A rare disease is defined as a condition that affects less than 200,000 people in the USA and fewer than 1 in 2,000 people in the EU. In the past, the development of orphan drugs was made difficult due to the small size of patient populations, which acted as a barrier for commercial development in the research and development of rare diseases. Yet, a rare diseases, especially when it affects children, has been proven to have a huge societal and economic toll. To address this disconnect, significant IP, regulatory and commercial incentives have been implemented to accelerate development of new treatments, first in the US (1983), in Japan (1993) and finally in the EU (2000). Treatments have been brought to market and more will come. (see this recap paper of key late-stage pipeline developments from IQVIA ? https://lnkd.in/daf3fudb) Beyond these incentives, the development of rare diseases have been pushed forward significantly by one strong tailwind: the unwavering commitment of patients community. Patients affected by rare diseases may be few but the families and communities affected are extremely large... and extremely vocal. In the US, we saw the strength of such communities around the approval of novel treatments for Duchenne Muscular Dystrophy by Sarepta Therapeutics. The fight continues. In France , the AFM-Téléthon has been unrelentingly advocating public authorities for years to support the development of novel treatments. It is today one of the most popular association in France. Today, with the support of Bpifrance and other key public and private stakeholders, it is building a very comprehensive #biotech ecosystem of public research institutes, investors, startup studios and biopharma players to further accelerate this effort. This is today. There is no turning back. ? #rarediseasesday #rarediseases #orphandiseases #pediatrics #businessdevelopment #patientadvocacy https://lnkd.in/dQ7kD43E

Do you work in research? The Epilepsy Research Institute wants to hear from you, as it has launched a survey to assess the current capacity in epilepsy research. There are an estimated 600 researchers currently working in epilepsy in the UK, less than 10% of the number of researchers working in dementia. This survey aims to establish a baseline of current capacity in epilepsy research, and to explore the opportunities and barriers to engaging with and undertaking research. The Institute wants to hear from: -Researchers currently working in epilepsy -Researchers who have previously worked in epilepsy -Researchers or clinicians who have never worked in epilepsy To find out more, you can view the survey webinar here: https://lnkd.in/eaP2aww4 and to take part in the survey, visit the hub at: https://lnkd.in/e3jsGwU8 #DravetSyndrome #DravetAwareness #Epilepsy #Research

Today we celebrate International Epilepsy Day, a crucial time to raise awareness on a neurological disorder that affects over 50 million people worldwide, with around 400,000 new cases diagnosed each year in Europe alone. Many European countries need to improve their plans to effectively address stigma discrimination and ensure access to treatment for people living with epilepsy. This is why we actively support the implementation of the 10-year cross-sectoral Global Action Plan for epilepsy and other neurological diseases (IGAP). Initiatives like #50MillionSteps, promoted by the INTERNATIONAL BUREAU FOR EPILEPSY, play a key role in raising public awareness. This year, Angelini Pharma’s leaders like Erik Lommerde, Rafal Kaminski and Calabrese Rosita together with our passionate colleagues collected over 6 million steps joining the campaign, a wonderful result I'm very grateful for. Our efforts are not limited to raising awareness but also aim to influence European legislative frameworks. Since 2017, we have been engaged in Headway, in partnership with The The European House-Ambrosetti Think Tank, a strategic platform that aims to improve the approach to brain health in Europe by producing annual reports and promoting dialogue between the various actors in the field, as recently done in France and Germany with institutional, multistakeholder roundtables. Our commitment goes beyond every single step: we will continue to work tirelessly until we see tangible changes in every European country. To make the world a more inclusive and aware place for people living with epilepsy, their carers, and their families. #AngeliniPharma #EveryStepCloser #WithYouInMind #StepAgainstStigma

Dive into this week's roundup of Epilepsy news, groundbreaking research, and stories. ?? To sign up to our Epilepsy Digest, click here: https://lnkd.in/gg6iuCr7 #epilepsy #epilepsyawareness

?? Exciting new research alert from Children’s Health Ireland (CHI) ?? This study, published in the British Journal of Haematology, delves into the prognostic impact of TLX3 in paediatric T-cell acute lymphoblastic leukaemia (T-ALL) and how MRD-risk stratification plays a crucial role. Here are three key takeaways (from a nephrologist's perspective): 1?? MRD-Risk Stratification: Incorporating MRD (Measurable Residual Disease) stratification significantly mitigates the negative prognostic impact of TLX3 rearrangements in T-ALL. This means better-tailored treatment strategies and improved outcomes for our young patients! ?? 2?? Genetic Insights: We identified specific genetic alterations, such as ABL-class fusions and CDKN2A/B deletions, that are more prevalent in TLX3 rearranged cases. Understanding these genetic markers helps refine treatment approaches and prognoses. ?? 3?? Survival Outcomes: Despite the higher occurrence of refractory disease in TLX3 rearranged patients, MRD-risk stratification levels the playing field, showing no significant differences in 5-year event-free survival (EFS) and overall survival (OS) between TLX3 and non-TLX3 patients. This highlights the power of precision medicine! ?? Check out the full paper for more in-depth analysis and findings. Kudos to all the researchers and clinicians involved! ???? ?? Read the full study here: https://lnkd.in/gj5Y6xAt #PaediatricOncology #LeukaemiaResearch #PrecisionMedicine #ChildrensHealth #MRDStratification #GenomicMedicine Peter McCarthy Owen Patrick Smith CBE, Hon FTCD Aengus O'Marcaigh

You want to learn more about longitudinal precuneus fMRI activity during episodic memory retrieval and how this is related to subsequent amyloid PET burden and APOE4? Check out our new preprint from the Multimodal Neruoimaging Lab led by Anne Maass or come talk to me at #AAIC24! Many thanks to the fantastic PREVENT-AD team! https://lnkd.in/dYxgpdti

March 26,2024? - Purple Day of EpilepsyIt is observed on 26 March to spread awareness about epilepsy and its impact on people's lives. The day also reminds people suffering from epilepsy that they are not alone.The theme for International Epilepsy Day 2024, “Milestones on My Epilepsy Journey”.