Have you registered for USH Connect 2024? Registration is now open! 💚 What is Usher Syndrome? - It is a rare, genetically inherited disease and its main symptoms include sensorineural hearing loss and retinitis pigmentosa which causes a slow progressive loss of sight. For some USH types, there are also balance issues too. Join the USH community, including Usher Syndrome Ireland on Saturday 21 September from 10am at The National Museum of Ireland, Dublin. To find more information and to reserve your FREE tickets, visit https://bit.ly/3xL3bpg
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The answer is no. Sickle Cell Disease is a genetic blood disorder affecting millions worldwide. It cannot be transmitted like a cold or any other form of contact. Ongoing research is being carried out to understand the disease better. Recent trends in treating Sickle Cell Disease suggest that early diagnosis and timely intervention are crucial in improving outcomes. Therefore, raising awareness about the disease is essential so that patients can receive the necessary help and support at the earliest possible stage. #HealthAwareness #SickleCellAwareness
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Specialty Pharmacy Expert & Consultant with a focus on clinical and operational program development, accreditation, compliance, and patient safety
May is CF awareness month! Learn more about CF below!
May is Cystic Fibrosis (CF) Awareness Month! Did you know some of these facts about CF? Cystic Fibrosis is a progressive, genetic disease that affects the lungs, pancreas, and other organs. Approximately 40,000 children and adults in the US are living with CF. Around 1,000 new CF cases are diagnosed each year. More than 75% of CF patients were diagnosed by age 2. Today, more than half of the CF population is over the age of 18. Life expectancy with CF has improved greatly with new therapies, but there is still no cure. #CFAwarenessMonth #CysticFibrosis #PatientCare
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Step into the shoes of those living with cystic fibrosis (CF) through our carousel. CF is a genetic disorder that affects the lungs, pancreas, and other organs. But did you know that CF directly relates to antimicrobial resistance (AMR)? The frequent lung infections CF patients face often require antibiotics, making them more vulnerable to resistant bacteria. Join us in spreading hope and knowledge. Together, we can fight both CF and AMR. 💜 #CFAwareness #FightCF #CysticFibrosisAwareness #AMResistanceFighters
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Let's talk about cystic fibrosis (CF) - a progressive genetic disease that, if left untreated, can cause persistent lung infections and respiratory failure. What else do you need to know? Swipe to learn more and pass this along. What's something you'd like to bring to light about CF? #CysticFibrosis #GeneticMedicine #mRNA
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With more than 10,000 rare diseases, everyone likely knows someone impacted by rare disease. According to the Genetic and Rare Diseases Information Center (GARD), rare diseases are estimated to affect more than 30 million people in the United States. Today is Rare Disease Day—a global initiative to raise awareness and generate support for everyone who is on a rare medical journey. My Faulty Gene joins in expressing our sincere gratitude and support to all those who have dedicated yourselves to finding cures for rare diseases—from researchers to parents. #rarediseaseday2024 #raredisease #rarediseaseawareness #rarediseaseresearch
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May is Cystic Fibrosis (CF) Awareness Month! Did you know some of these facts about CF? Cystic Fibrosis is a progressive, genetic disease that affects the lungs, pancreas, and other organs. Approximately 40,000 children and adults in the US are living with CF. Around 1,000 new CF cases are diagnosed each year. More than 75% of CF patients were diagnosed by age 2. Today, more than half of the CF population is over the age of 18. Life expectancy with CF has improved greatly with new therapies, but there is still no cure. #CFAwarenessMonth #CysticFibrosis #PatientCare
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This year Rare Disease Day falls on the rarest day in the calendar - 29 February. Rare diseases affect fewer than one in 2000 people, but collectively they affect 300 million people worldwide. Many rare diseases are genetic, and we’re part of an international effort to help identify the extra-rare genes that cause rare inherited retinal diseases. We’re a member of the Foundation Fighting Blindness Consortium alongside more than 40 other research centres from around the world and contributing to Uni-Rare - global registry of people with these rare genes. Through this, we’re working to improve understanding of IRDs and boost the development of potential therapies. https://ow.ly/yxQG50QJ0KE
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A succinct review of what is known for APOL1-mediated kidney disease (AMKD) including its evolutionary origin and current screening/management options. I learned about these APOL1 variants while working as a lab GC on a germline kidney product. When in clinical practice a few years ago I had never come across these. If this is a new area for you as well, I recommend the read! https://lnkd.in/g6_TUsPe #genechat #nephrogenetics #beangenes
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(6/9) We are excited to disclose our second genetic disease program: Fabry disease. In #Fabrydisease, which effects approximately 8,000 people in the U.S., harmful levels of Gb3 accumulate in blood cells and tissues throughout the body, due to insufficient αGal enzyme activity, which can lead to a range of symptoms, including potentially life-threatening ones such as kidney failure, heart failure and stroke. We have created the first non-inhibitory chaperone, which is designed to stabilize the αGal protein without inhibiting its activity, thus enabling greater Gb3 clearance across organs. We expect this program to enter the clinic in the second half of 2025.
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Cystic Fibrosis Awareness -telugu Video!!! Did you know that Cystic Fibrosis, often referred to as the "65 Roses" disease, is a genetic disorder affecting the respiratory and digestive systems? Let's shed light on the importance of genetic evaluation for prevention. Genetic screenings empower individuals to understand their carrier status, a crucial step in preventing the transmission of CF. Couples, consider Carrier Screening to make informed decisions about family planning and ensure a healthier future for your children. Let's join hands to raise awareness about Cystic Fibrosis and advocate for early intervention through genetic evaluations. Together, we can break barriers and pave the way towards a world free from this challenging disease. #CysticFibrosisAwareness #65Roses #GeneticEvaluation #PreventionMatters #HealthyFamilies #telugupodcast #GeneticScreening #GeneticAwareness #telugu #65roses #65rosesforcysticfibrosis
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