Vinod Subramanian’s Post

🔬 Hot drop for our #Neuroimmunomodulation community! 🧠 Our latest blog post is about the fundamental Role of Glucocorticoids in Human Chronic Inflammatory Disease. 🎢💡 Read it now here: https://lnkd.in/dNbaYvp8 📚 Missed our previous posts? No worries! You can catch up on all Prof. Rainer Straub’s quick and to-the-point expert assessment on neuroimmunomodulation topics via the overview page: https://lnkd.in/dRVZzkne 📖 Stay tuned for more updates from the #Neuroimmunomodulation journal by Karger Publishers 📘🔍 #Science #Research #BLOG #glucocorticoid #inflamation #autoimmunediseases

In my next episode of Rare Connection, I talk to Joel, co-founder of Endurant Health about his AI program to diagnose rare diseases. Join me Friday June 14th at 9M Pacific 12PM Eastern to learn about this fascinating topic. 

Exciting news – we’ve launched our RAREly Told StoriesToolkit, presented by Global Genes and The Disorder Channel! If you’ve wanted to make your own rare disease documentary, this toolkit is the place to start. When your story is out there, people will find it and find you. Some will have faced the same diagnosis. Others may have a different rare diagnosis, but still feel a shared bond. These people might become part of your support network or perhaps collaborators as you work to improve the conditions people face. Whichever way your story goes, access the RAREly Told Stories Toolkit, and learn to share your story on video with the rare disease community! 📹 https://lnkd.in/eKJJem3t #CareAboutRare #RareDisease #RareDiseaseAwareness #GlobalGenes #RARElyToldStories #ShareYourStory

It's the last day of February, and that means it's Rare Disease Day. According to the National Center for Advancing Translational Science, rare diseases affect about 1 in 10 people in the United States. In many cases, and due to systematic, socio-economic, and linguistic challenges, underserved communities are more likely to have delays in diagnosis, with a greater chance of hospitalization from preventable conditions. In addition, some rare diseases can be an extra burden on patients and families who are already dealing with other hardships. We recognize those individuals today and every day by spreading awareness and improving access for those with unique conditions. Click the links to find out more: https://lnkd.in/exnF7dQZ https://lnkd.in/gDzXRyER #SynterexRecognizes #RareDiseaseDay #CareAboutRare #ShowYourStripes #LeapDay #LeapYear

#RareDiseaseDay #ICareforRare This Rare Disease Day, Dr. Neelam Thakur - Clinical Geneticist, urges everyone to raise awareness about the invisible struggles of living with rare diseases. Often overlooked due to their very rarity, rare diseases can have a devastating impact. Early diagnosis and all-round proper care are crucial, but access can be a significant hurdle. Together, we can amplify the voices of those living with rare diseases and advocate for better support systems. Every voice matters in this fight for understanding and support. #WeCareforRare #NepalRareDiseases #RareDiseases #advocacyforchange #LightupforRare

🚨 FINAL SURVEY CALL 🚨 This is phase 2 of the Batten disease research priority-setting process in partnership with Kennedy Krieger Institute. Please select 10 research questions you think are most important for researchers to study. This anonymous survey is open to the ENTIRE Batten community and takes 10-15 minutes to complete: https://ow.ly/Uju150SvCKB #Survey #BattenAdvocatesForACure #BattenDisease #Research

Dr Shlomi Haar (UK DRI Care Research & Technology) is developing #DigitalBiomarkers that can provide cost-effective, objective, and robust measures to track progression of neurodegenerative disease. Hear more about his work⬇️📽️

Today is Rare Disease Day.   What makes a disease rare?   A disease is rare when it affects less than one in 2,000 people.   This comes with particular issues.   There’s a lack of scientific knowledge and quality information that often results in a delay in diagnosis. There are in equalities and difficulties in access to treatment and care. Symptoms can differ across patients.   We need more international research to ensure that experts, researchers and clinicians are connected. We need equitable access to diagnosis, treatment, health and social care and social opportunity for people living with a rare disease.   My daughter’s rare disease is so rare, we have yet to meet anyone with exactly the same genetic disorder. If you google "3q11 trisomy mosaicism" you’re just going to find content I have written. I remember being given our genetic diagnosis and desperately googling for something, anything, to tell us what were are facing. So a lot of my drive to share our experience is to ensure that others embarking on a rare path have a story of hope. Because whilst the rare path is an often rocky one, it is also a wonderful journey in so many ways. She truly is one of a kind. Looking forward to seeing a lot of awareness in my feed today, recognising the 3 million of the population live with a rare disease. So, maybe not that rare after all? #RareDiseaseDay2024 #RareDiseaseDay #RareDiseaseAwareness #ILoveSomeoneRare  

A new #COVID19 pub from @UUtah researchers! Check it out: A Linguistic Analysis Examining the Impact of COVID-19 on Pneumonia Diagnosis and Disease Models https://lnkd.in/gtyZTdrm @UofUResearch

🌍 Today, we honor the strength and resilience of individuals living with rare diseases worldwide. #RareDiseaseDay serves as a reminder of the unique challenges faced by millions of people and their families, and the urgent need for greater awareness and support. 🔎 The role of genetic testing in the journey towards understanding and treating rare diseases is crucial. Genetic testing plays a pivotal role in providing answers, guiding treatment decisions, and offering hope to individuals and families affected by these often complex and challenging conditions. 👥 Together, let's raise our voices, spark conversations, and foster hope for a future where every person with a rare disease receives the attention, resources, and understanding they deserve. Join us in standing with the rare disease community today and every day. #RareTogether #RareDiseaseAwareness #GeneticTesting #Healthcare