Association for Diagnostics & Laboratory Medicine’s Post

A brief history of the INPDR International Niemann-Pick Disease Registry: a disease-specific registry created "by our community for our community" which benefits patients, families, clinicians, researchers and other key stakeholders! The INPDR encompasses Acid Sphingomyelinase Deficiency (ASMD, types A & B) and Niemann-Pick disease type C (NPC). We record information that accurately reflects the patient experience – in order to improve that experience. It has taken a lot of work to get it to where it stands today, with a huge amount of input from the tireless advocates who have helped to make it happen. Have a look below at some of our biggest milestones from across the years, which showcase how we have developed into where we stand in 2024. The question is, where will we be in the next ten years? If you're an NPD patient or clinician then join us over at: www.inpdr.org and be part of this positive progress. #community #collaboration #registry #raredisease #niemannpick #inpdr

🔬 CLA Awareness Day: A Call to Medical Professionals 🔬 Today marks CLA Awareness Day, dedicated to increasing understanding and enhancing diagnosis of Complex Lymphatic Anomalies—a group of rare diseases affecting the lymphatic system, encompassing Gorham Stout Disease, Generalized Lymphatic Anomaly, Central Conducting Lymphatic Anomaly, and Kaposiform Lymphangiomatosis. As healthcare providers, your role in early recognition and treatment of these conditions is crucial. These anomalies can be challenging due to their progressive nature and potential to affect both soft tissue and bones. Awareness and continued education can lead to improved outcomes for patients worldwide. 📚 For more in-depth information and to join the conversation on advancing care for CLA patients, visit bit.ly/CLAawareness. Let's harness our collective expertise to foster better patient journeys and push the boundaries of what's possible in lymphatic disease management. #CLAawarenessDay #MedicalResearch #HealthcareInnovation #LymphaticHealth #CLAawarenessDay #LymphaticHealth #RareDiseaseAwareness #ComplexLymphaticAnomalies

I think this is so critical to offer the marketplace and highlights how Sobi - North America is responding to the demands of their customers..offering something of value that helps HCPs fulfill their mission. More companies should take note and offer content and resources of true value. Well done Mason Axford!

Acanthamoeba keratitis (AK) is a serious eye infection, most common among contact lens wearers, that can cause severe pain and potential vision loss. While AK is treatable, it is often misdiagnosed due to its similarities with other eye infections and can drastically affect quality of life. The Global Alliance Against Acanthamoeba Keratitis, led by UNSW Associate Professor Nicole Carnt, has now launched a White Paper outlining key steps for raising awareness and improving AK treatment. Designed for healthcare clinicians and regulators, the paper highlights patient experiences and provides recommendations on AK diagnosis and contact lens safety. Read the full White Paper on the Acanthamoeba Keratitis Eye Foundation website: https://lnkd.in/exhtBGEj #AcanthamoebaKeratitis #AKGlobalAlliance #PatientPerspective #EyeDisease #ContactLens #AKPrevention #VisionCare #Ophthalmology #MedicalResearch #RareDisease #nowaterwithcontacts #FDA #MHRA #FightForSight #UNSW #AKEyeFoundation #BCLA #CCLSA #AAO #ISO

I am excited to share my latest article published by the MedReport Foundation on an important topic that continues to affect many individuals worldwide: Long COVID. I explore the susceptibility factors, highlighting that individuals with a history of allergies, autoimmune diseases, anxiety, and other health conditions may be more prone to developing Long COVID. Furthermore, I discuss the current management strategies, which focus on a symptom-based approach and comprehensive clinical assessments. Read the full article here: https://lnkd.in/ewfnUkvA

The battle against syphilis just got a powerful boost with the recent release of significant recommendations by the United States Centers for Disease Control and Prevention (CDC), as highlighted in the Morbidity and Mortality Weekly Report (MMWR). These recommendations provide comprehensive guidance on the tests and protocols necessary for the accurate diagnosis of syphilis in the United States. With the alarming rise in syphilis cases globally, especially in developed nations like ours, these recommendations couldn't come at a more critical time. Click the link below to access the full article: https://bit.ly/4caSuvE Follow us for Daily Stories in the Medical Space #SyphilisDiagnosis #InfectiousDiseases #PublicHealth #CDC #MMWR #HealthcareUpdates #DiagnosticRecommendations #TreponemaPallidum #SyphilisAwareness #MedicalScience #SexualHealth

Support for Assembly Bill 2613 Yesterday, rare disease patients, caregivers, and supporters gathered at the California State Capitol in Sacramento to advocate for Assembly Bill 2613. AB 2613 seeks to establish a Rare Disease Advisory Council (RDAC) within the state. If passed, this council would give a voice to the estimated 1 in 10 individuals living with a rare disease in California. Rare diseases cover a broad spectrum of medical conditions. For patients with one of the over 10,000 known rare conditions, it can take several years to receive an accurate diagnosis and effective treatment. Only a few rare diseases are well understood, with most lacking sufficient attention and funding for research. This lack of awareness often contributes to the challenges in obtaining timely treatment and care faced by many rare disease patients. By creating this council, California will join twenty-seven other states that have already enacted similar legislation to support their rare disease communities, demonstrating that an RDAC can be an invaluable resource. A HUGE thank you to the National Organization for Rare Disorders for their continued efforts and for organizing a successful day. LFF was honored to be a part of it. Thank you to all the supporters of this important bill. We will continue to keep everyone updated on its progress. #lyme #lymefightfoundation #rare

At Astellas, we put patients at the heart of everything we do, which is why we value partnering with patient organizations.   We recently sat down with representatives from Macular Society, International Agency for the Prevention of Blindness (IAPB), Foundation Fighting Blindness, Asociación Mácula Retina and Comitato Macula to discuss the key challenges and unmet needs of patients with retinal diseases. Together we talked through how we can best support and positively impact the patient community.   Learn more about how Astellas prioritizes patients: https://lnkd.in/demKqdT4   #PatientAdvocacy #EyeHealth 

More than 90% of type 2 #diabetes care is provided by the country's #primarycare clinicians. As more and more is learned about the overlapping etiologies among metabolic and cardiometabolic diseases the more refined and targeted the therapeutic options are becoming. Which is historic. But the pace with which those therapies are coming to market will make staying current with the most effective, evidenced-based treatments for T2D more challenging than it already is for frontline health care professionals. The American Diabetes Association in early May announced the formation of the Diabetes Primary Care Alliance, made possible through a new ADA partnership with the DARTNet Institute. Read more about how this expanding national network of nearly 2000 primary care practices plans to accelerate uptake the latest best practices in care for diabetes by similar practices across the country. https://lnkd.in/e9rUqySn

The MESI mTABLET simplifies diagnostics in Panama! Our partner Woundcare Panama presented the MESI mTABLET ABI at Health Days (Jornadas de Salud), a series of events organised at several polyclinics in Colón. The focus was on the importance of early discovery of Peripheral Arterial Disease (#PAD). Here is how the MESI mTABLET ABI can contribute to fast and effective arterial assessment of patients at risk of PAD: ✔️ the Ankle-Brachial Index measurement in minutes ✔️ immediate sharing of the measurement result with a doctor or specialist at another location ✔️excellent mobility for hospital care (trolley) or home visits (carry-on bag)