Watch Loretta MacInnes talk about life before and after being diagnosed with a rare condition called Fabry Disease, following genetic testing. "The very fact that I had no risk factors, should have been the ‘red flag’ that something else was going on. Listen to the person in front of you, and try to take a step back and look at the big picture. It could give that individual the answers they are looking for" You can find useful links in the video description on YouTube: https://lnkd.in/eMgcNM6Q You can also find Loretta's website and blog MyFabryDisease here: https://myfabrydisease.com Today (day 3) #GenomicsConversation focusses on patient experiences. Follow the hashtag on social media for more great videos and stories.
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With my counselling journey behind me, I am advocating for a much needed cause which impacted my family through Huntington’s disease. I tested negative, and now wish to do what I can to help educate all.
For anyone who works directly with patients/clients in the healthcare area, you should know something about the rare, genetic, neurological, Huntington’s disease, which is fatal. All children born to parents who have been diagnosed, tested positive or at risk of inheriting this disease, also have a 50% chance of inheriting this disease. Have you heard of Huntington’s disease? Have you been educated on it? Would you like to know more? #huntingtonsdisease #raredisease #awareness #genetic
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On today’s Rare Disease Day, we join in to shed light on the approximately 300 million patients worldwide with a Rare Disease. On average, it takes around seven years until a patient is diagnosed. Genomic analysis can help to reduce that time significantly. To share genomic data between researchers and clinicians more easily and efficiently, GHGA is currently building an omics data platform in Germany for sharing and research. By bringing many rare cases together, we can open up opportunities for more research into these diseases. ACHSE e.V. Allianz Chronischer Seltener Erkrankungen e.V. #rarediseaseday #ColourUP4RARE #SeltenSindViele #GemeinsamBuntWerden #TagderseltenenenErkrankungen #TeiltEureFarben
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Senior Learning Specialist | M.A. Marketing (Anglia Ruskin) | Training & Development Strategist
Did you know genetic services can help employees take action on health risks, including cancer and heart disease? Benefits decision-makers, learn how to tap into the potential of genetics in our upcoming TELUS Health | TELUS Santé webinar, featuring experts in the field. #TeamTELUS
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Servant Leader | International Halal Trade Consultant 5 Trillion Dollars Economy by 2030 | Foreign Investment Analyst | Agtech Strategist | Career Coach | Growth Strategy Coach |
Did you know genetic services can help employees take action on health risks, including cancer and heart disease? Benefits decision-makers, learn how to tap into the potential of genetics in our upcoming TELUS Health | TELUS Santé webinar, featuring experts in the field. #TeamTELUS
Webinar: The untapped potential of genetics for health risk management
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Day 3 of a wonderful conference discussing the most recent developments in clinical outcomes, novel therapies, and genetic discoveries to better understand the growing skeleton in relation to childhood health and disease! #ICCBH2024
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Join GR Chandak online on tomorrow, 3pm as he speaks on Sickle Cell Anemia: Past, Present and Future! This talk will take you through a common genetic disease in India, and the tools and tech that the scientists are developing to detect, treat and manage the disease more effectively. #Diagnostics #geneticdisease #sicklecellanemia
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Senior Strategy Manager | Co-Chair of AI Think Tank @ TELUS Legal and Regulatory Affairs
Did you know genetic services can help employees take action on health risks, including cancer and heart disease? Benefits decision-makers, learn how to tap into the potential of genetics in our upcoming TELUS Health | TELUS Santé webinar, featuring experts in the field. #TeamTELUS
Webinar: The untapped potential of genetics for health risk management
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Clinical trials often focus on identifying genetic factors that influence disease progression and treatment response. This information can lead to therapies based on your unique genetic makeup. bit.ly/3s0S3Sc #ICONSanAntonio #ResearchStudy #HealthyAdults
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Yesterday was International Undiagnosed Day - 29th April On the international Undiagnosed Day we join forces to raise awareness for all patients without a diagnosis. Most of them suffer from unexplained symptoms, that will one day turn out to be a rare disease. Yet they don’t even have a name for all this. They could be just one more genetic test away from knowing the cause and having a name Like our the patients and their families in our EURAS project, who often know how it is to wait years for a proper diagnosis. Knowing the cause helps them to better understand their disease (CFC, Costello, Noonan and SYNGAP1), accepting it and gives hope for improved quality of life through better treatment options and targeted therapies. This is our collective aim within the EURAS project. #undiagnosed #raredisease #research #genetictesting EURAS does not offer diagnostic services or genetic testing. In case you or a loved one are suffering from unexplained symptoms and you think genetic testing might help, contact a local genetic counselor. Make sure you get the best diagnostic options available and never give up!
