Alumis’ Post

Founded in 2003, DNDi's story is about turning frustration into action to ensure all people can benefit from the fruits of scientific progress. Two decades later, we’ve delivered 12 treatments for six deadly diseases – thanks to the talent and commitment of hundreds of partners who have helped us prove that collaborative, not-for-profit R&D can deliver for neglected patients. 🆕 Browse our 20-year timeline to see how we've been innovating together through the years to bring the best to the most neglected: https://bit.ly/47mR4Li

Here's a thought experiment - What defines an MS expert? One response is that it's an individual with many years of research and clinical expertise. Indeed this is one way to consider MS expertise. There is another way to look at MS expertise - through the lived experience of people with MS. Viewing expertise through this lens means that there are nearly 3 million MS experts worldwide. People with MS must be engaged to bring their unique perspectives and expertise to inform our drive to cure MS. During last year's ECTRIMS MSMilan 2023 Congress we saw a great example of what this engagement can look like. The ECTRIMS Patient Community Day brought together people with MS, NMOSD, and other demyelinating diseases, researchers, and patient organization leaders for conversations about progress, challenges, and opportunities for impact. In this ECTRIMS podcast, National MS Society leadership volunteer Bonnie L. Higgins and I joined Brett Drummond on the ECTRIMS podcast for a conversation about the ECTRIMS Patient Community Day. We shared our thoughts as a person living with MS (Bonnie) and a patient organization leader (Tim) on the importance of creating these opportunities for collaboration between patients, researchers, and organizations. Thanks to ECTRIMS and Brett Drummond for inviting us to share our thoughts on this important initiative. Together we are stronger. #ms #multiplesclerosis

The Porphyria “Avengers” will be assembling on October 29 in Bethesda, MD. Today is the first time I heard of this. Probably the same for you. Watch this entertaining clip and learn more about porphyria.

Why Show Your Stripes®? When you “Show Your Stripes” you are helping to raise awareness and show support for millions of adults and kids in the U.S. and around the world with a rare disease or undiagnosed condition. The zebra is the official mascot for rare disease patients. Historically, medical professionals were told that when they “hear hoofbeats,” they should not expect to see a zebra. In other words, look for the more common answer, a horse. Today, we know that 1 in 10 Americans is a zebra! It’s not always obvious to recognize or diagnose a person with a rare disease (a zebra). As a result, this can cause a delay in care and often negatively impacts a person’s quality of life or life expectancy. It’s for this reason we ask our partners, individuals, groups and members of our community to “Show Your Stripes” leading up to and on Rare Disease Day and throughout the month of February and into early March. #Showyourstripes #Zebra #RareZebra #raredisease #medicalprofessionals #medicalprofessional #showsupport #awareness #striped #patients #PKU #HCU #MSUD #UCDs #maladiesrare #PCU #passirare #RareDisease #NotSoRare #1in12 #Research #CureforRare #FightForRare #Knowledge #Science #HealthCare #RareInCanada #SupportResearch #Biology #Innovation #maladiesrare

🌐💙At Bingli, we've developed a cutting-edge methodology for the development and validation of algorithms aimed at early diagnosis and screening of populations at risk of rare diseases. 🌐💙 www.bingli.eu/screening This is not just about technology; it's about making a tangible impact on the lives of those affected by these rare conditions. Our commitment goes beyond innovation—it's about bringing hope and perspective to those who need it the most. Early diagnosis can be a game-changer in both first and second line settings, offering a window of opportunity for timely interventions and improved outcomes. With our new methodology, we are taking a significant step towards empowering healthcare professionals and researchers in their quest to identify and address rare diseases promptly. Let's use this Rare Disease Day to not only raise awareness but also celebrate the power of smart innovation in healthcare. 💪💙 #RareDiseaseDay #HealthcareInnovation #BingliAdvancesHealthcare

TREAT-NMD are proud to be collaborating with 8 other outstanding organisations on The Patient Lifestyle and Disease Data Interactium (PaLaDIn). The PaLaDIn team brings together academics, SMEs and patient organisations from five countries whose partnership allows key stakeholders to share and apply expertise in neuromuscular diseases, patient advocacy and data science. TREAT-NMD recognises the powerful partnership and unique opportunity that the PaLaDIn project provides the neuromuscular community: “We at TREAT-NMD provide a global network of experts in neuromuscular diseases. The strength and expertise of our network, and all nine global partners working together to deliver the PaLaDIn project, means that we can collaborate to transform the NMD field. “The mission of this consortium of partners is to create a data platform that will help to pioneer effective treatments, delivering the best care for those living with NMD and other rare diseases across the world. “One of the biggest challenges we face in our field is the lack of patient data. PaLaDIn is designed to tackle exactly that challenge, working with patients, healthcare professionals and researchers to collate impactful data that can make a big difference in rare disease diagnosis and treatment.” - David Allison, CEO of TREAT-NMD Services Ltd https://lnkd.in/eGynBBQB #PaladInEU #neuromuscular #NMDs #FSHD #Duchenne #researchinnovation #healthinnovation Aparito Parent Project aps Duchenne UK Leiden University FSHD Society Amsterdam UMC Ludwig-Maximilians-Universität München John Walton Muscular Dystrophy Research Centre @ Newcastle University

Dogs Without Borders from VML Health has been featured on Fast Company’s 2024 World Changing Ideas list! People living in remote areas only make the journey to see a doctor when they experience symptoms. We came up with a game-changing solution — turn rescue dogs into miracle workers, training them to catch cancer before it progresses in places that lack basic medical services. Learn more via the link below! #VMLHealth #FCWorldChangingIdeas #HealthcareMarketing #PharmaMarketing

Dogs Without Borders from VML Health has been featured on Fast Company’s 2024 World Changing Ideas list! People living in remote areas only make the journey to see a doctor when they experience symptoms. We came up with a game-changing solution — turn rescue dogs into miracle workers, training them to catch cancer before it progresses in places that lack basic medical services. Learn more via the link below! #VMLHealth #FCWorldChangingIdeas #HealthcareMarketing #PharmaMarketing

Join AKF and CareDx, Inc. on Dec. 12 from 1 - 2 pm ET for a webinar on the importance of monitoring the health of transplanted kidneys. Hear from Dr. Diane Cibrik of University of Kansas Medical Center and Dr. Silas Norman of the University of Michigan Health. Register: https://bit.ly/3Tb4EgM and encourage your patients and colleagues to attend, too! Webinar topics include: 👉 Post-transplant process 👉 What are routine post-transplant tests? 👉 What are they monitoring? 👉 How often do you have to get labs done? 👉 What is donor-derived cell-free DNA (dd-cfDNA)? 👉 How is dd-cfDNA different from traditional post-transplant labs?

Join AKF and CareDx, Inc. on Dec. 12 from 1 - 2 pm ET for a webinar on the importance of monitoring the health of transplanted kidneys. Hear from Dr. Diane Cibrik of University of Kansas Medical Center and Dr. Silas Norman of the University of Michigan Health. Register: https://bit.ly/3Tb4EgM and encourage your patients and colleagues to attend, too! Webinar topics include: 👉 Post-transplant process 👉 What are routine post-transplant tests? 👉 What are they monitoring? 👉 How often do you have to get labs done? 👉 What is donor-derived cell-free DNA (dd-cfDNA)? 👉 How is dd-cfDNA different from traditional post-transplant labs?