In recognition of Bleeding Disorders Awareness Month, we take a moment to reflect on the experience of people like Zev, who was born at a time when there were no treatment options for haemophilia A. Haemophilia A is a genetic disorder where the blood doesn’t clot properly, which can lead to episodes of prolonged bleeding. In Australia, there are more than 3,200 people living with diagnosed haemophilia. Life for people with haemophilia A has changed considerably from what Zev experienced in his early years. Despite the challenges he faced, Zev’s story is one of #NewPossibilities, reflecting the theme for this year’s Bleeding Disorders Awareness Month. Watch Zev's story as he reflects on his lifelong haemophilia A journey. #BleedingDisordersAwarenessMonth #Haemophilia For more information about haemophilia, please contact your healthcare professional. This is the experience of a single patient living with severe haemophilia A and may not be representative of all people with haemophilia.
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World Haemophilia Day is observed annually on April 17 to raise awareness about this rare, inherited bleeding disorder. This year's theme is "Equitable access for all: recognizing all bleeding disorders", underscoring the importance of ensuring diagnosis, treatment, and comprehensive care for all individuals with inherited bleeding disorders. It's crucial to watch out for symptoms and seek prompt medical attention to properly manage Haemophilia. #WorldHaemophiliaDay #HaemophiliaAwareness
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🔴🩸 **World Haemophilia Day: Join the Movement for Change 🩸🔴 The 17th of April marks World Haemophilia Day, a time to recognize the challenges faced by those living with this rare blood disorder. At Novo Nordisk, we are committed to being lifelong companions for the haemophilia community. Our goal is to create a future where everyone with haemophilia is diagnosed early and can lead a life with as few limitations as possible. Changing Haemophilia® is the initiative developed to address the unmet needs in haemophilia and other rare blood disorders. Our website is a comprehensive platform designed to provide support and guidance to individuals living with rare blood disorders. Join us to raise awareness about living with a rare blood disorder. Let's share knowledge, provide support, and make a lasting impact together. https://lnkd.in/dTJ-Sei6 #WorldHaemophiliaDay #ChangingHaemophilia #RareBloodDisorders #NovoNordisk #Support #Awareness #CommunitySupport #Healthcare
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Today is World Amyloidosis Day. Receiving a diagnosis for amyloidosis is often a long journey. Symptoms can mimic other conditions and over a third of patients see more than five doctors before getting the correct diagnosis. To highlight the uphill climb that many patients face on their way to diagnosis, we are joining Amyloidosis Alliance to raise awareness of this rare blood disorder. By stepping up together, we can help improve outcomes and better support those living with amyloidosis. #WorldAmyloidosisDay
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📢 The Impact of a Diagnosis – FASD Awareness Month 🎥 In this powerful video, Jen shares her emotional journey of her son’s diagnosis with fetal alcohol syndrome. Learn how understanding his FASD has shaped their lives and the importance of early diagnosis and support. Watch now and help raise awareness! 💡 #FASD #FASDAwareness #DiagnosisMatters #FASDUnited
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Today, we honor World Hemophilia Day, shedding light on the strength, resilience, and community that surrounds those affected by this rare bleeding disorder. From raising awareness to advocating for better treatments, equitable access, and support, let's stand together in solidarity with those living with hemophilia and other bleeding disorders. Hemophilia: Hemophilia is a rare genetic disorder that affects the blood's ability to clot properly. People with Hemophilia have deficiencies in certain clotting factors, which are proteins necessary for blood clotting. As a result, they experience prolonged bleeding, even from minor injuries. Theme for World Hemophilia Day 2024: The theme for World Hemophilia Day 2024 is "Equitable access for all: recognizing all bleeding disorders". The theme focuses on providing treatment worldwide to all people with this inherited bleeding disorders. Together, we can make a difference and create a world where everyone affected by hemophilia can thrive and live. #Hemophilia #WorldHemophiliaDay #Healthcare #HealthSy #SincerelyYours
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Today is World Hemophilia Day, a day created by the World Federation of Hemophilia to educate people about the causes, symptoms, diagnosis, and management of haemophilia, as well as the challenges faced by those living with the condition. This year's theme centres around "Equitable access for all: recognizing all bleeding disorders." and advocates for "Treatment for All," where individuals with inherited bleeding disorders receive care without discrimination based on the type of bleeding disorder, gender, age, or geographical location. As a global medical communications agency with a strong heritage working with clients to advance the treatment of haemophilia, Porterhouse Medical is proud to support the bleeding disorders community in striving for a world where everyone, whether affected by haemophilia A or B, von Willebrand disease (VWD), or any other bleeding disorder, has equal access to diagnosis, treatment, and comprehensive care. Today and every day, let's work towards a future where treatment is available to all and where all individuals can live their lives to the fullest. 🩸 https://ow.ly/jyhv50RhSuz #WorldHemophiliaDay #Haemophilia #BleedingDisorders #TreatmentForAll #HealthcareEquity
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Many people are unaware of the rare disorder called arginase deficiency (ARG1-D), which can lead to severe symptoms like spasticity, seizures, and developmental delays if not diagnosed early. Misdiagnosis is common due to its similarity to conditions like cerebral palsy. Raising awareness is crucial for timely diagnosis and treatment to prevent irreversible damage. Learn more about how early detection through simple blood tests can make a difference in patient outcomes. (Article in Swedish) https://lnkd.in/eGYKNP6q #RareDiseaseAwareness #Arginase1Deficiency #EarlyDiagnosis
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World Hemophilia Day is an annual observance on April 17 to raise awareness around hemophilia, a rare bleeding disorder in which the blood does not clot properly. The disease more common in men occurs due to alterations in genes that regulate our body to stop bleeding. The day is dedicated to supporting the global bleeding disorders community and advocating access to care, and treatment for all living with such disorders irrespective of age, gender, or location. There is no cure for the bleeding disorder currently and it's important to take measures for its management. For more updates visit our journal website: https://lnkd.in/gM8Q2uVZ Submissions are open for the upcoming issue on all the topics related to the scope of the journal. For all journal-related queries, please feel free to contact us at clinicalresearch@maplesjournals.com Image Source: Internet #WorldHemophiliaDay #clinical #medical #research
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30th October is #WorldHPPDay and as we approach this day, I want to raise awareness about Hypophosphatasia (HPP), a rare, often underdiagnosed metabolic disorder. It affects people of all ages, and its symptoms can overlap with other conditions, making it harder to identify, particularly in adults. In adults, did you know that HPP can mimic inflammatory arthritis? Many patients present with musculoskeletal pain, which can be mistaken for more common forms of inflammatory arthritis. If someone has been diagnosed with seronegative inflammatory arthritis but also has persistently low ALP (alkaline phosphatase) levels, they should be evaluated for HPP. Why is this important? Early detection and diagnosis can significantly improve patient outcomes. While HPP is rare, being informed can make a difference, helping to avoid misdiagnosis and ensuring proper care and management. #WorldHPPDay #Hypophosphatasia #RareDiseaseAwareness #EarlyDiagnosisMatters #PatientCare #HPP #MetabolicDisorders #Softbones
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🌟 Understanding Charcot-Marie-Tooth (CMT) statistics from the Global Registry for Inherited Neuropathies (GRIN): • 12.5% of participants reported hip dysplasia. • 6.5% of cases remain unknown. • 80% reported no hip dysplasia. 📚 Data gathered from a diverse cohort of 307 patients across 22 types of CMT. What is CMT? Charcot-Marie-Tooth disease is a group of inherited disorders that affect the peripheral nerves, impacting movement and sensation. 🔗 Want to make a difference? Share your experience or learn more at JoinGRIN.org. #CharcotMarieTooth #CMT #GRIN #CMTneuropathy #HipDysplasia #HereditaryNeuropathyFoundation #MedicalResearch #CMTCommunity #CMTweGOTthis #Charcotmarietoothdisorder #CMTawareness #CMTstats
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Managing Director at Ethical Strategies
2moNice one Amy O'Hara and Houry Mayissian