ClearView conducts a variety of rare disease projects, most of which highlight the extreme unmet need of patients due to limited treatment options and difficulty in diagnosing the disease due to lack of awareness. Select projects delve into the patient / caregiver’s perspective for living with (or caring for someone with) a rare disease, to fully understand the impact of the disease. This May, we invited all ClearView employees to a talk with Lisa Murray, an SMA Caregiver, to bring the patient voice to the forefront of our work and increase awareness of SMA. #clearviewhcp #lifesciencesstrategy #YourFutureisinClearView #SMA #CureSMA
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Braynelle and Brandon have been managing their son Kai’s diagnosis of Dravet Syndrome, causing severe seizures since he was four months old. After starting medication distributed by Anovo, Kai’s seizures have reduced dramatically to give him the quality of life he deserves. Watch our latest video to see how Anovo helps Braynelle manage her son’s rare disease by providing proactive support that ensures he never misses a dose. When it comes to her family’s health, Braynelle says it best, “Anovo is always on my side.” #PatientSuccessStory #PatientCare #AnovoRx
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👁️ Crohn's disease & Ulcerative colitis are the two most common types of Inflammatory Bowel Disease (IBD) 🫡 Patients & family members and our dedicated volunteers are excited to see Straits Times, a leading newspaper run this article. Creating awareness & educating people, thank you 🐌 Yes, some of us can lose a lot of weight but some don't. Invisible illnesses are like that, challenging to explain. 📰https://lnkd.in/gFw5CbX3 ℹ️ www.ibd.org.sg #patientexperience #patientadvocacy #invisibleillness #ibd #crohnsdisease #ulcerativecolitis
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GCC Medical Affairs Manager | Rare Genetic Disease | Hematology
As the battle against rare diseases continues, as our understanding of diseases transforms, we witness an increase in the recognition and diagnosis of rare diseases. Amidst this evolution, the suffering and challenges patients with rare diseases endure daily are often overlooked. We at Biopharma-mea together with patients, caregivers, and the broader medical community are committed to amplifying patients' voices, driving clinical research forward, expanding access to innovative therapies, and offering unwavering support to alleviate the unbearable burden of rare diseases, foster hope, and improve the quality of life for all those affected by rare diseases. #rarediseaseday2024 #rarediseases #shareyourcolours #rarediseaseday #rarediseases #rarediseaseawareness
In support of the rare disease community, we're committed to making a difference. Our journey is fueled by our dedication to bringing innovative medication to our region, offering hope, and improving lives. Let's celebrate the strength of patients and caregivers, and continue our work toward a future where no one is left behind #rarediseaseday #rarediseases #shareyourcolours #RareDiseaseTeam
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⚡ #ParkinsonsAwarenessMonth is coming to an end, a month dedicated to raising awareness for Parkinson’s Disease (PD), the people affected by it, and treatment methods. PD affects more than 1.2 million people in Europe, but many misconceptions are still prevailing – here are some popular myths about PD: https://lnkd.in/dUT9AHgb #BSCEMEA #DeepBrainStimulation #DBS
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Are you a chronic kidney disease warrior, or do you know someone who is? 🩺💪 Join our study and make a difference! Fill out the form on our website, and our team will connect with you within 24-48 hours. Together, we're on a mission to enhance the lives of CKD patients. Will you be part of this mission? #linqresearchllc #clinicaltrials #clinicalstudies #clinicalresearch #medicalresearch
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Today we spotlight on the strength and courage of those facing rare diseases. Every individual impacted by a rare condition has their own unique journey, yet together, form a powerful community united by hope and determination. On this Rare Disease Day, we raise awareness about the challenges faced by patients and their caregivers, advocates, and families. It is a day to celebrate victories, big and small. We acknowledge the ongoing efforts in the pursuit of better treatments and cures. By continuing to spread awareness, we have the power to foster compassion, inspire reach, and drive tangible change. #RareDiseaseDay2024 #RareDiseaseAwareness #HopeForACure #RareDiseaseCommunity #Duchenne #DuchenneMuscularDystrophy #DuchenneAwareness #MuscularDystrophy #CureDuchenne #RareDiseaseCommunity #Mdawareness
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June is Myasthenia Gravis Awareness Month! This autoimmune disease has a profound impact on millions of lives worldwide. As we observe this significant month, let's take a moment to acknowledge the daily challenges faced by the estimated 70,000 people in the United States alone who are living with myasthenia gravis. At Upstate HomeCare, we are dedicated to providing specialized care for Myasthenia Gravis. Our immunoglobulin therapy (IG) is a key component of this, helping individuals manage their symptoms and achieve better health outcomes in the comfort of their own homes. To learn more about Myasthenia Gravis, visit myasthenia.org #MGFA #myastheniagravis #autoimmune #mgawarenessmonth
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Are you passionate about data-driven care and interested to learn how it can benefit patients with Parkinson’s disease? Visit Adamant Health Oy at booth 3 at the Deutscher Kongress für Parkinson und Bewegungsstörungen in Rostock 🇩🇪, and meet our CEO Paulus Carpelan and myself to learn more about the latest advancements in this field - and how the data-driven management of Parkinson’s can improve the life of those affected! #parkinsonsdisease #parkinsonstreatment #revolutionizingparkinsonscare
Meet us at booth #3 at the Deutscher Kongress für Parkinson und Bewegungsstörungen 2024 to learn more about our data-driven approach for managing Parkinson’s disease and how our measurement and analysis service can support you in providing the best possible treatment for your patients! #parkinsonsdisease #parkinsonstreatment #revolutionizingparkinsonscare
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Shedding light on World Inflammatory Bowel Disease Day! Join us as we raise awareness, offer support, and advocate for those living with IBD. Together, let's work towards better understanding, improved treatments, and ultimately, a cure. #WorldIBDDay #RaiseAwareness #SupportIBD #freecamp #worldinflammatoryboweldisease #boweldisease #bowelmovement #healthcamp #healthcheckup #HealthCheckupCamp #ibdclinic #livehealthy #stayhealthy
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1moThat's commendable, ClearView Healthcare Partners Healthcare Partners! It's crucial to prioritize understanding rare diseases from the patient and caregiver perspectives. Bringing Lisa Murray, an SMA caregiver, into the conversation helps elevate awareness and empathy in your work. Keep up the impactful initiatives! 👏