Beacon for Rare Diseases’ Post

For the cell biologist in the crowd, here's a golden opportunity to do some invaluable research that will change lives. From the FAM177A1 Research Fund: Are you a researcher passionate about tackling rare epilepsy disorders? The Rare Epilepsy Partnership Award is calling for Letters of Intent by June 11! 📝 This grant offers up to $100,000 for 1 year to advance FAM177A1 Research Fund initiatives, partnering with CURE Epilepsy Foundation. 🌟 🔍 Our research initiatives include: 1️⃣ Developing patient-derived cell lines to unravel FAM177A1 loss-of-function mechanisms and test gene therapy effectiveness. 2️⃣ Establishing drug repurposing assays to find potential treatments and crafting gene therapy strategies. 3️⃣ Utilizing patient databases to define clinical phenotypes, develop biomarkers, and capture symptomatology. 📅 The Request for Proposals opens May 14th. Don't miss this chance to make a difference! Submit your Letter of Intent and join us in eliminating epilepsy caused by FAM177A1 Related Neurodevelopmental Disorder. Together, let's advance research and transform lives. 💡 #EpilepsyResearch #RareDisease #ScienceForGood #RareEpilepsy #CureFAM

🎓 Funding Opportunities for Dravet Syndrome Research 🎓 Are you aware of the funding opportunities offered by the Dravet Syndrome Foundation? Deadline for applications: August 23, 2024 The Transformational Science Grants support projects with substantial preliminary data that investigate hypotheses directly related to Dravet syndrome and have the potential to make a significant impact in the field. If you have a research project focused on Dravet syndrome, don’t hesitate to apply! Find more information and submit your application here: https://lnkd.in/eA6D2gfS 🔍 For additional grant opportunities adapted to the field of epilepsy, explore this ERN EpiCARE - Rare and Complex Epilepsies webpage listing available funding calls: https://lnkd.in/e5edQXqj Isabella Brambilla #ERNEpiCARE #DravetSyndrome #EpilepsyResearch #ResearchFunding #GrantOpportunities #HealthScience #MedicalFunding #ResearchGrants #HealthcareInnovation

Earlier this week the members of the recently formed National Parkinson’s Alliance met at WEHI. Amongst items on the agenda was a discussion on developing a National Action Plan for #Parkinson’s in Australia to ensure advocacy, support and research funding needs are met.    The National Parkinson’s Alliance was formed to bring together research institutes (Menzies Institute for Medical Research, NeuRA (Neuroscience Research Australia), QUT (Queensland University of Technology), University of Tasmania and WEHI) with advocacy and support organisations (Fight Parkinson's’s, Parkinson's NSW, Parkinson’s Tasmania, Shake It Up Australia Foundation for Parkinson's Research and Wings 4 Parkinson’s) with key stakeholders having lived experience of the disease.    The Alliance’s collaborative work will focus on earlier detection and diagnosis of Parkinson’s, improving access to healthcare, resources, support and treatments, as well as advancing research to better understand causes, mechanisms, treatments and prevention of Parkinson’s.    Following the Alliance’s advocacy and their Australian Summit to End Parkinson’s in Canberra in March, the Government provided $800,000 in the budget for the Alliance to create the first National Action Plan for Parkinson’s in Australia.    📸 Members of the National Parkinson’s Alliance at WEHI.    #ParkinsonsDisease #ParkinsonsResearch #PD #Parkinsons 

World Brain Day 2024 World Brain Day made its debut in 2014 as a project of the Public Awareness and Advocacy Committee of the World Federation of Neurology. This international organization has been functioning for more than 50 years, representing the specialty of neurology in more than 100 countries around the planet. The hope for World Brain Day is that this celebration will bring awareness and advocacy for the health of the brain. Other focuses include education, prevention, and access to care. In keeping with these goals, each year the day is assigned a theme that is relevant to the topic of the brain, promoting conversation, education and collaboration for healthier brains in the future. Some of the past themes for World Brain Day have included:

Did you know that 1 in 100 people in the UK have epilepsy? And that these people have a three times higher chance of death than the general population? Epilepsy research is critically underfunded, proportional to the number of people who live with epilepsy (for example, there is over 600% more funding into dementia than epilepsy vs. 40% greater number of patients with dementia). This survey will help to start addressing inequalities in research, which is an essential first step to positively changing lives. Epilepsy is a predominately invisible condition. Someone you know or their children or their loved ones are likely to live with epilepsy. 70% of these people could live a seizure free life with the right treatment - research will help to achieve this. Please share for reach or to anyone you know who might be interested.

On the 12th of February we celebrated the International Epilepsy Day. According to the World Health Organization (WHO), Epilepsy affects approximately 50% of the global population, representing a significant neurological challenge characterized by recurrent seizures that can profoundly impact individuals' quality of life. Join us in marking this International Epilepsy Day with groundbreaking news from the NEUROSENSE Research Consortium! We are proud to unveil our visionary initiative aimed at revolutionizing epilepsy management and saving lives. NEUROSENSE is on a mission to pioneer the first SUDEP predictive biomarker and develop the world's first SUDEP Predictive Medical Device. As we commemorate International Epilepsy Day, let's envision a future where epilepsy-derived mortality is drastically reduced, thanks to groundbreaking research and technological innovation. Join us in spreading awareness and hope for those living with epilepsy and their loved ones. Together, we can make a profound difference! #InternationalEpilepsyDay #NEUROSENSE #SUDEP #EpilepsyAwareness #Innovation #MedicalResearch #AI #HealthcareRevolution 🧠💡

🌐 #EpilepsyDay: Navigating the Waves of Hope with Poseidon CRO 🧠 As we commemorate International Epilepsy Day, let's spotlight the tireless efforts of Poseidon Clinical Research Organization. Here's a glimpse into our impactful voyage: 1. Pediatric Breakthroughs: Our ship docks at children's hospitals, where we unravel the molecular tides of young minds. From genetic markers to novel therapies, Poseidon CRO has participated in illuminating paths toward seizure freedom. 2. Adult Expeditions: Beyond childhood, our compass points to adults battling epilepsy. We explore personalized treatments, decode drug interactions, and chart courses for better quality of life, with several RWE studies in our active. 3. Global Currents: Poseidon CRO collaborates across continents. We attend conferences, exchange knowledge, and hoist the flag of epilepsy awareness. Our legacy and network echoes worldwide. 4. Community Anchors: In local communities, we organize support groups, educate schools, and fight stigma. Knowledge becomes a lifeboat, keeping families afloat during epileptic storms, wether in EU , in North Africa or in South Eastern Europe. 🚢 Navigating Together: Join us! Share your #MyEpilepsyJourney. Let's challenge stereotypes, inspire others, and sail toward brighter horizons. Reach out to us for more information at : contact@poseidoncro.com #EpilepsyAwareness #Neurology #healthcareheroes

🧠 Now live at the 2024 Intensive EEG and Epilepsy Course: Dr. Anto Bagić, MD, PhD is presenting "Introduction to Epilepsy: Classification of Seizures and Epilepsies." Dr. Bagić, Chief of the Epilepsy Division at the University of Pittsburgh and Director of the UPMC Epilepsy Monitoring Unit, is a renowned expert in epilepsy diagnosis and treatment. With his pioneering work in utilizing Magnetoencephalography (MEG) for challenging epilepsy cases, Dr. Bagić continues to shape the future of epilepsy care worldwide. 🔑 Key topics: Understanding epilepsy classification Identifying different types of seizures Advanced methods in epilepsy treatment and diagnosis #EEG #Epilepsy #HealthcareEducation #Neurodiagnostics #CME #MedicalConference #UPMC #Procirca

See some of the latest funding opportunities, job openings, and upcoming events in the latest Researcher Update. https://lnkd.in/gKV63VDW #epilepsyresearch #epilepsygrant #neurology #PTEresearch #SUDEPresearch