PicnicHealth’s Post

ALS research depends on people living with ALS to join the National ALS Registry. Every individual’s story can contribute to our understanding of the disease, its causes, and how to fight it. Join the Registry and help advance ALS research! https://buff.ly/47nIo6I

"You can do better and different research if you engage with patients…they are experts by experience." In our "Designing a digital patient-reported real-world study" webinar, Mark Larkin, Founder of Vitaccess, talks about the importance of patient involvement in real-world study design and how, particularly for rare diseases, it can produce better research. https://hubs.ly/Q02KyfH80 #patientcenteredresearch #realworldstudies

Excited to share that my article titled "Exploring the Potential of Virtual Reality in the management of Cardiac diseases: A Systemic Review" has been published in the International Journal of Innovative Science and Research Technology! 📝This article delves into the promising role of virtual reality in revolutionizing cardiac disease management. Thank you to all who supported me along this journey! #VirtualReality #CardiacHealth #Publication #HealthcareInnovation

An in-depth exploration of the aHUS Patients’ Global Research Agenda, this series of articles dives deeply into 15 key questions that patients & caregivers would like researchers and clinicians to prioritize. https://lnkd.in/eiCkR9Mg 29 Feb 2024 is world Rare Disease Day!

Are you interested in using breath analysis for your liver disease research? 🔍 Our new document, ‘Breath Analysis and the Liver: Owlstone Medical’s 101’, contains everything you need to know about why we use breath, what data we have, and how we can help you incorporate breath analysis into your research. Watch our short video below to learn more 👇 You can download the document for free here: https://ow.ly/ljFN50QU1H6

Save the date! We will discuss the featured abstracts from EADV 2024 in the field of psoriatic disease.

Uncover new insights in eye care with Discovery's intuitive progression graphs! 📊 Prof. Marion Munk, M.D., Ph.D shares how these graphs enhance clinical understanding, making analysis faster and more insightful. Dive into the future of eye disease management 👉 https://lnkd.in/exDWaGR2 #EyeCareInnovation #ClinicalInsights #DiscoveryPlatform

Welcome to Know Rare Research Week 💙 💛    Join us this week on social media as we explore new research, clinical trials and news in rare disease.    What topics would you like us to explore? Let us know in the comments below👇    -    #raredisease #rarediseases #rarediseaseawareness #medicalresearch #rarediseaseadvocacy #clinicaltrials #clinicaltrial #KnowRare

Atypical HUS - Have you seen this snapshot of new aHUS research? https://lnkd.in/eW-DP6Pd Our virtual library, now with over 1300 aHUS-specific publications, to keep learning post- Rare Disease Day! 

It would be a lie if I wrote it and an inappropriate April Fools joke. But imagine bringing an announcement like this:  Scientific breakthrough – my team and I have found a cure for all the world's rare diseases. How amazing it would be to share if it were true. But we haven't yet found a cure for all rare diseases. In fact, we're not even close. We keep working, though; when we do that, breakthroughs will come. More than 350 million people wake up every morning with severe limitations due to a rare disease diagnosis. Let's together reduce those limitations. #HealthCareInnovation #Science #RareDiseases #DrivingChange