Today we are wrapping up a fantastic WISDOM Project Kick-Off Event! The day has provided great insights into the Multiple Sclerosis, Rheumatoid Arthiritis and Myasthenia Gravis databases as well as relevant EU regulation, notably the European Health Data Space (EHDS). WP2 lead Saarela Janna, Research Director at Institute for Molecular Medicine Finland (FIMM), held a presentation and led the discussion regarding the work package, enabling us to attain a more comprehensive understanding of the available data. The thorough discussions and collaborative spirit have set the stage for great advancements in the management of chronic immune-mediated diseases. As a key technology partner, VEIL.AI has the opportunity to contribute our expertise in next-generation anonymization technology and synthetic data generation to overcome the challenge of secure cross-border data sharing within the WISDOM project. A big thanks to the event organizers at Karolinska Institutet and all participants for making this event a resounding success! We look forward to continuing collaboration with all partners. #WISDOMProject #MultipleSclerosis #RheumatoidArthiritis #MyastheniaGravis #DataPrivacy #DataSharing #DataReuse #CrossBorder #DataAnonymization #SyntheticData #CIMDs #HealthData #EHDS #Stockholm
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CQDM announced nearly $3.7 million in funding for a collaborative research project on promoting cellular rejuvenation. The funding includes a grant of nearly $1.5 million from the ministère de l’Économie, de l’Innovation et de l’Énergie of the Government of Quebec, awarded by CQDM, and financial support from Quebec company RejuvenRx, the Canadian Institutes of Health Research and the fond Partenariat de l’Université de Montréal. The project is led by Guy Sauvageau, Anne Marinier – both at Université de Montréal – and RejuvenRx. Sauvageau and Marinier previously discovered and developed a molecule that can be a potential therapy against cellular aging. However, as this is not available for oral intake, the aim of this project is to define and develop derivatives to test their effectiveness in animal models. Since Alzheimer’s and Parkinson’s diseases present these cellular aging characteristics, this molecule could become a preventive or restorative therapy for cognitive functions. The research team and the Quebec company RejuvenRx will work together to better understand aged-related diseases and will try to create new therapies that will benefit the Quebec and world population. #CellularRejuvenation #ResearchFunding #CQDM #QuebecInnovation #AgingTherapy #AlzheimersResearch #ParkinsonsResearch #PreventiveMedicine #RestorativeTherapy #HealthInnovation #UniversitédeMontréal #RejuvenRx #ResearchCollaboration #HealthcareAdvancements
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So proud to be an organizing partner of the 2023 Genetic Health Information Network Summit in Nashville this week! Day one is now complete, but here are the highlights and takeaways: ➡️Communication, no matter where you sit in the genomics ecosystem, is key. We need to find better ways to communicate genomics with patients, providers, payers, health systems and all stakeholders. ➡️The need to address infrastructure for the delivery of precision medicine is real. This includes educating multiple workforces to scale the delivery of this much needed care. ➡️Personal stories drove home the true impact of innovations when delivered to patients. Patients are the why and need to be at the forefront of the work we do to make change. ➡️Connecting with the network of stakeholders motivated to change the way precision medicine can be delivered is powerful! Let's continue these conversations and build an implementation strategy together. Can't wait for Day 2!
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Today, I join the #whatraremeanstoyou initiative shared between AZAFAROS B.V. and Niemann-Pick UK (NPUK) on behalf of the #rarediseaseday. Let's define what RARE means to me: ● 𝐑𝐄𝐀𝐋: About 5% of people living with a rare disease exist, and we cannot forget them. ● 𝐀𝐖𝐀𝐑𝐄𝐍𝐄𝐒𝐒: There is a real need to spread the knowledge about these diseases, as it is the first step to improving their diagnosis and treatment. ● 𝐑𝐄𝐒𝐄𝐀𝐑𝐂𝐇: To increase basic, translational, and clinical research is completely necessary to improve our knowledge of the cellular basis of the diseases and their pathophysiology, and to provide the community with more and better treatments. ● 𝐄𝐐𝐔𝐈𝐓𝐘: Not all people have the same needs, so they do not need to have the same resources, we need to distribute them not equally but equity.
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🌟 Today, Anton Ussi, CEO of EATRIS and Steering Group member of Together for Rare Diseases, is sharing how our partnership is making a difference! 🌟 🔬 Anton Ussi showcases the pivotal role of EATRIS (European Infrastructure for Translational Medicine) in bridging the gap between scientific breakthroughs and tangible medical advancements. The pan-European research infrastructure serves as a catalyst for transforming discoveries into impactful treatments. 🤝 Together, we are determined to unlock new avenues for partnerships. Let's join forces to make a difference in rare disease treatment and patient care! Watch the video below to find out more on the transformative potential of our collaboration 👇 #EATRIS #Together4RareDiseases #RareDisease #TranslationalMedicine
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Listen from #CEPCAL President Dr. Claudia Gonzaga-Jauregui chatting with Kira Dineen, MS, LCGC, CG(ASCP)CM as part of the PhenoTips #SpeakerSeries about #RareDiseases, the importance of molecular diagnosis to obtain better care and access to potential therapies, and the need to make genomic technologies affordable and accessible in #LatinAmerica for equitable healthcare.
The recording of last month's #RareDiseaseDay #SpeakerSeries #webinar is now available to stream on-demand for free! From Dr. Claudia Gonzaga-Jauregui, Principal Investigator at the Laboratorio Internacional de Investigación sobre el Genoma Humano, Universidad Nacional Autónoma de México (UNAM), discover the barriers faced by medical professionals and patients in the #RareDisease space, challenges in improving the accessibility of rare disease care in #Mexico and #LatinAmerica, improving diversity in data sets and the ethical considerations involved, and best practices in improving equitability of rare disease care in lower and middle-income countries. Stream the complete discussion hosted by DNA Today's Kira Dineen, MS, LCGC, CG(ASCP)CM: https://lnkd.in/ecvFntQR
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📢 NEW BLOG POST from the NP-C Corner: A History and Possible Future 🧬💡 🔍 In this comprehensive article, Ellie Van Velsen delves into the intriguing journey of Niemann-Pick Disease Type C (NPC) – its origins, diagnostic advancements, and the remarkable progress made in understanding this rare genetic disorder. 💪 Join us as we explore the historical milestones and scientific breakthroughs that have shaped our understanding of NPC. From its initial discovery to the identification of causative genes, we'll uncover the pivotal moments that have paved the way for potential treatments and therapies. 🌐 Furthermore, we'll dive into the promising future of NPC research, highlighting the cutting-edge studies and emerging technologies that hold tremendous potential for improving the lives of those affected by this condition. 🤝 It is our hope that this blog post will not only spread awareness about Niemann-Pick Disease Type C but also inspire collaboration and support for ongoing research efforts. 🔗 To read the full article, click the link in our bio or visit https://loom.ly/nzLAH28 Or see all articles here: www.npcd.org.au/blog 📢 Let's come together to learn, grow, and make a difference in the lives of those impacted by NPC. Remember to share this post with your friends, family, and anyone who might find it valuable! #NPCorner #NPCaustralia #NiemannPick #Science #Communication #Health #NiemannPickDisease #NPC #GeneticDisorders #RareDisease #Research #MedicalAdvancements #ScienceBlog #Health #Awareness #HopefulFuture
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We at SKC aim to support patients with rare diseases in gaining access to effective treatment. Our colleagues Dr. Ingo Hantke, manager market access, Steven Krüger, medical writer and Univ.-Prof. Dr. Matthias P. Schönermark, founder and managing partner, have holistically examined the topic "Orphan vs. non-orphan drugs in Germany - Is there really a need for adjustment in the benefit assessment?" and will be presenting the scientific results with a poster during the national conference on rare diseases (NAKSE for short). #NAKSE2023 #orphandrugs #benefitassessment #AMNOG
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Ophthopedia Update:Comment on “Prevalence and economic burden of Keratoconus in the United States”: In this cross-sectional study,1 Bir Singh et al. used data from the Vision and Eye Health Surveillance System (VEHSS) to describe the prevalence of keratoconus in the US. The authors use this estimate to extrapolate on trends in the economic burden of keratoconus. The total lifetime cost of keratoconus in the US was found to increase by $1.2 billion ($2.6 to $3.8 billion) over a 4-year period (2016 to 2019) – a drastic increase over a short period of time. There are several important limitations to consider when interpreting the results of this study. #Ophthalmology #Ophthotwitter #Scicomm
Comment on “Prevalence and economic burden of Keratoconus in the United States”
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Health Optimization Medicine Specialist, Healthy Longevity, Women's Health, Precision Wellness, Board-Certified OB-Gyn, Bioidentical Hormones, Targeted Nutrition, Clinical Metabolomics
Oftentimes ignored and denied-environmental toxins. As an OB-Gyn, I can't help but think how many cases of endometriosis, adenomyosis, and infertility could have been avoided by early testing for common systemic toxins, patient awareness and avoidance of these toxins, and prompt optimization of each of our cells' detox pathways via the use of metabolomics tests and targeted nutrition using the Health Optimization Medicine framework. #precisionhealth #metabolichealth #metabolomics #endocrinedisruptors #endometriosis #adenomyosis #infertility #environmentaltoxins #healthoptimizationmedicine
Exposomics is the systemic, unbiased, -omic scale examination of non-genetic factors contributing to health and disease. An individual’s exposome consists of all the environmental influences to which they are exposed throughout their life, and this list is almost endless — from physical-chemical elements to lifestyle to ecosystems. In HOMeHOPe, exposomics is one of the core modules of the Essential Certification due to the sheer size and impact it has on everyone, from the prenatal period to old age. The Exposomics Module dives into the Exposed Unit (EU) and its impact on the human holobiont, otherwise known as the human holo-organism. Future healthcare practitioners need to understand the EU in detail, and this module can help. ➡️ Check out the exposomics blog article here: https://lnkd.in/gMmNq6KY ➡️ Check out the Exposomics Module: https://lnkd.in/gs2Vt6bZ ➡️ Check out all the courses involved in the Essential HOMeHOPe Course: https://lnkd.in/gc6-_qEV #HOMeHOPe #HealthOptimization #Exposomics #Exposome
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Business Coach at KI Innovations AB
1moGood meeting!