Adriaan Eyer’s Post

Our friends at #Worthing and #Sythensis led by @AdriaanAyer are building interesting platform. Below is their plea and invite for support. Dear friends, We're reaching out when the world is keenly aware of the impact of pandemics. Many lives have been touched, and we share a deep hope for a safer future. That's why we're excited to announce our new project: [Project Phoenix - Prevent & Predict Pandemics]. Artificial Intelligence (#AI) has the potential to be a powerful tool in preventing future outbreaks. Through this crowdfunding campaign, we aim to raise £1,200,000 to [invest in the development of an AI Platform]. Every contribution, big or small, brings us closer to making this vision a reality. We understand that some of you might be facing financial challenges yourselves. Even sharing our project with your network is a huge help. Together, we can build a future where we're better prepared for potential threats. With gratitude, The Synthosense Team P.S. Learn more about our project and donate here: https://lnkd.in/dAu8Ezjc

Subject: Building a Brighter Future Together: Preventing Pandemics with AI. Dear friends, We're reaching out during a time when the world is keenly aware of the impact of pandemics. Many lives have been touched, and we share a deep hope for a safer future. That's why we're excited to announce our new project: [Project Phoenix - Prevent Pandemics]. We believe Artificial Intelligence (AI) has the potential to be a powerful tool in preventing future outbreaks. Through this crowdfunding campaign, we aim to raise £1,200,000 to [invest into the development of an AI Platform]. Every contribution, big or small, brings us closer to making this vision a reality. We understand that some of you might be facing financial challenges yourselves. Even sharing our project with your network is a huge help. Together, we can build a future where we're better prepared for potential threats. With gratitude, The Synthosense Team P.S. Learn more about our project and donate here: https://lnkd.in/g_jd9TkH

There is a need and responsability for pharmaceuticals to research on rare disease. Government of course should support for example with tax relief. This is social responsibility! All families affected by a rare disease, don't have 3 million euro! Not even selling their houses. To date, approximately, 300 million people live with rare diseases. About 20 in 100,000 have Hereditary Spastic Paraplegia (hsp), so investigation should focus on a treatment for the common root for hsp and not of individuals cases for variants! Good luck Tallulah! I hope that treatment helps you and could sit the future to help the rest of the hsp community. AEPEF Asociación Española

In 2023, AI dominated discussions across industries, especially in biotech. Insilico Medicine led, dosing the first patient with an AI-designed lung disease treatment in Phase 2 trials. Other standouts included Exscientia and Elucidata, pushing AI into drug development and data standardization. For more, visit here: https://bit.ly/442RIgz #AI #Data #DrugDevelopment #DiseaseTreatment

Mitochondrial diseases (mito) are a devastating set of rare genetic conditions which can affect any organ at any age and cause any symptom. There are no cures and few effective treatments. You can make a difference... Spread Awareness: 📢 Share information about mito on social media, at local events, and through educational workshops. Collaborate: 🤝 Partner with schools, workplaces, and community centers to host awareness events and educational sessions. Collaboration amplifies outreach efforts and promotes community support. Participate in Fundraising: 🎗️ Join fundraising events dedicated to supporting research. Every contribution takes us a step closer to meaningful treatments and cures. Advocate for Research Funding: 💡 Advocate for increased funding for mitochondrial disease research and healthcare resources. Your voice can help prioritize research initiatives and improve patient outcomes. Engage with Policymakers: 🏛️ Advocate for healthcare policies that support mitochondrial disease patients. Push for better access to diagnostic tools, treatments, and specialized care to enhance quality of life. Follow us for more as we continue to raise awareness for #MitochondrialDisease next week for #WorldMitoWeek2024

Discover how Foundation 29 is transforming the diagnostic journey for children with rare diseases through our latest case study. Before receiving a proper diagnosis for Dravet Syndrome, a rare genetic neurological disease, Julian’s son, Sergio, faced a long and difficult journey. This experience inspired Julian to start Foundation 29, a non-profit that uses technology to shorten diagnostic timelines for children with rare diseases. The goal is to prevent other families from experiencing the same struggles and delays Julian and his family faced. Foundation 29 empowers patients to take control of their health by utilizing their data and collaborating with healthcare professionals and institutions. This approach not only enhances their own well-being, but also contributes to the health of others. This mission aligns with our framework pillars of Patient and Family Empowerment and Equipping Providers, both of which aim to create a clear path toward timely and accurate diagnoses for all children.    For more information about Foundation 29 and additional case studies you can implement, visit https://lnkd.in/eBQta_2t. #GlobalCommission #PatientandFamilyEmpowerment #EquippingProviders 

Mitochondrial diseases (mito) are a devastating set of rare genetic conditions which can affect any organ at any age and cause any symptom. There are no cures and few effective treatments. You can make a difference... Spread Awareness: Share information about mito on social media, at local events, and through educational workshops. Collaborate: Partner with schools, workplaces, and community centers to host awareness events and educational sessions. Collaboration amplifies outreach efforts and promotes community support. Participate in Fundraising: Join fundraising events dedicated to supporting research. Every contribution takes us a step closer to meaningful treatments and cures. Advocate for Research Funding: Advocate for increased funding for mitochondrial disease research and healthcare resources. Your voice can help prioritise research initiatives and improve patient outcomes. Engage with Policymakers: Advocate for healthcare policies that support mitochondrial disease patients. Push for better access to diagnostic tools, treatments, and specialised care to enhance quality of life. Find more information: https://lnkd.in/e6UKPzan #IlluminateTomorrow #WorldMitoWeek2024 #Mito #MitochondrialDisease

There are about 7000 known rare diseases, affecting around 8% of the world’s population. 75% of rare disease patients happen to be children. Rare diseases also known as orphan diseases, affect a relatively small number of people compared to more common illnesses. Despite their individual rarity, collectively, rare diseases impact a significant portion of the global population. Rare diseases encompass a diverse range of conditions, each presenting its own set of symptoms, treatments, and prognoses. While some rare diseases are genetic in nature, others may result from infections, environmental factors, or unknown causes. Examples of rare diseases include cystic fibrosis, Huntington's disease, and amyotrophic lateral sclerosis (ALS), among thousands of others. Innovative techniques and advanced scientific technology have enabled the emergence of new therapies for several rare disorders over the past two decades, providing hope for survival where previously there was none. These novel drugs are demonstrating miraculous results, offering a beacon of hope for patients. The National Policy for Rare Diseases 2021 launched by Govt. of India, outlines provisions for financial assistance to patients suffering from rare diseases based on treatment requirements: 1. Group 1: Diseases amenable to one-time curative treatment will receive financial support of up to Rs. 20 lakh from the Central Government under the umbrella scheme of RAN for entitled beneficiaries. 2. Group 2: Diseases requiring long-term or lifelong treatment with relatively lower costs will receive financial support from State Governments. 3. Group 3: Diseases with definite but high-cost, lifelong therapy will be addressed through a Digital Platform, inviting voluntary donations from individuals and corporate donors. Donors can choose to support different Centres of Excellence (CoEs) for patient treatment. Funds will be utilized in a decentralized manner, with each CoE having its own Rare Disease Fund, subject to approval by the responsible authority. ID: A poster with a white background and illustration of people in different colors and a text written "Rare Disease Day" Source: https://lnkd.in/gziBavc #Rarediseaseday2024 #Accessibility #Inclusion #Diversity #AccessibilityMatters Rtn Veena Shenoy Srikanth Shenoy Kavya Poornima Balajepalli Adv. Shikha Uma Agarwal

Why is it important to fund clinical research? Dr. Lubov Nathanson says funding helped her study single immune cells in Gulf War Illness patients. This gives her a better idea of what is going on with the immune system, including epigenetic changes. With host HAYLIE POMROY GROUP, INC , Dr. Nathanson and the Institute work tirelessly to close the gap between patient care and how that help is appropriately provided and given. 👉 Watch the podcast to learn more - Epigenetics: Often Changing Your Health Destiny. https://brnw.ch/21wGDbZ #INIM #health #research #clinicalresearch #clinicaltrial #innovation #nonprofit #epigenetics #funding #research #prevention #medicine #diagnosis #healthcare #neuroimmune

At 25 years old, my doctors didn’t think I was going to survive. They had run out of options for treating my rare and deadly disease. A priest even read me my last rites as my family said their final goodbyes. I somehow survived, thanks to a regimen of seven different chemotherapies, but I knew I would relapse again if I didn’t treat the underlying cause of my disease. I started running experiments on my cells and found that a communication line called mTOR was turned into overdrive. The best part was that there was already a drug made for a different disease that inhibited mTOR. I began taking that drug and have now been in remission for over 10 years! It begs the question: What other diseases could we find cures for if we maximized the uses of existing drugs? That’s why I co-founded @EveryCure, a non-profit that utilizes artificial intelligence to unlock the full potential of existing drugs! Go to EveryCure.org to join us on this mission! #medicine #raredisease #doctor