Ipsen’s Post

When rare is almost not rare enough. von Willebrand Disease (vWD) is the most common inherited bleeding disorder, and yet our understanding of it and its effects on those that have it lags behind that of disorders such as haemophilia. Why is this? In this blog, Haemnet's Mike Holland talks about their ongoing vWD360 study and what they hope to achieve with it. https://lnkd.in/gCsGCaNE

Navigating life after a rheumatic disease diagnosis can be challenging. Read our latest blog by Dr. Teresa Sosenko that provides valuable insights on what to expect, how to manage symptoms, and the resources available to help you on your journey. Empower yourself with knowledge and take the next steps toward a healthier future! #RheumaticDisease #HealthAwareness #IBJI #PatientEducation #ChronicIllness

Lyme Disease: A Growing Threat in Florida Lyme disease is a complex illness impacting countless individuals nationwide, including Florida. With traditional treatments often falling short, biomagnetic therapy offers a promising alternative. This blog post explores the challenges of Lyme disease and the potential of biomagnetic therapy for long-term relief. https://lnkd.in/eJr4i-MZ #LymeDisease #ChronicLyme #BiomagneticTherapy #ComplementaryMedicine

As a member of the GENEGUT consortium, we find it important to raise awareness about Crohn's disease. World IBD Day is observed on May 19 each year, uniting people worldwide in their fight against Crohn’s disease and ulcerative colitis, collectively known as inflammatory bowel diseases (IBD). Here are some key points about this important day: Purpose and Awareness: World IBD Day aims to raise awareness about IBD and advocate for action by governments and healthcare professionals. Approximately ten million people worldwide live with IBD, and this day serves as a platform to show support for them. Global Reach: Over 50 countries across 5 continents participate in World IBD Day events. Patient organizations from around the world collaborate to promote awareness and improve the lives of those affected by IBD. Symbol of Support: Many IBD associations use the purple ribbon as a symbol of awareness and solidarity. By wearing or displaying this ribbon, individuals show their support for those living with IBD. SECURE-IBD: Amid the global pandemic, the SECURE-IBD database facilitates cross-border collaboration among IBD patients and healthcare providers. It helps gather insights into factors such as age, IBD treatments, and the impact of COVID-19 on IBD patients. Remember, World IBD Day is an opportunity for all of us to come together, raise awareness, and support those affected by these challenging conditions. Let’s stand united in the fight against IBD! 💜🌎. #awareness #ibd #crohnsdiease

Tomorrow is World AS Day 2024. Have you heard of ankylosing spondylitis (AS)? Also known as axSpA (axial spondyloarthritis), AS can be very painful, limiting people’s mobility. Yet the average time to diagnosis is currently seven years and, historically, decades. Symptoms include back pain, sacroiliitis, fatigue, and stiffness, as well as conditions such as uveitis, psoriasis, and inflammatory bowel disease. If you have persistent, unexplained back pain, mention AS / axSpA to your primary care team. And do your own research. In the US, we are lucky to have the Spondylitis Association of America (SAA) for guidance and advocacy. In fact, the SAA is hosting a global summit RIGHT NOW (May 3rd and 4th), for which registration is free. #spondylitis, #axSpA, #SpondySummit Here's more info for you: https://lnkd.in/exXqD8Hn

It is so important to advocate for patients, and especially those who face certain stigmas and discrimination because of their disease. This is why I am proud of our commitment at Pfizer to broadening understanding of #SickleCellDisease and supporting those who are impacted.   By coming together with various stakeholders, through our amplified voices, we can raise awareness, reduce stigma, and drive meaningful change for the millions affected by this disease. Learn more here: https://lnkd.in/e7JnXSgY   #ShinetheLightonSickleCell #SCDAdvocacy #WSCD24

Today is #RareDiseaseDay, celebrated every February 29th! Did you know? Over 300 million people globally live with a rare disease, and there are over 6,000 known at present. These individuals face unique challenges in diagnosis, treatment, and access to resources. This Rare Disease Day, let's #ShowYourRare and raise awareness for the strength, resilience, and hope of those living with rare diseases, their families, and caregivers. Together, we can advocate for research, support, and inclusivity for this often-overlooked community. Visit the attached link to understand more about Rare Diseases! https://lnkd.in/dYe5RqA5 #RareDiseaseDay #RareDiseases #Fortrea

Health-related Quality of Life in 10 years Long-term Survivors of Chronic Kidney Disease: A From-J Study https://lnkd.in/gVckmHwA

Subtypes of Parkinson’s disease? From the article: Through meticulous analysis, they unearthed three unique subtypes of Parkinson’s: Inching Pace (PD-I), Moderate Pace (PD-M), and Rapid Pace (PD-R). This classification hinges on how quickly symptoms progress, with PD-I showing the mildest progression, PD-M advancing at a moderate rate, and PD-R experiencing the most rapid decline. I am John Andrejack. This is a message of hope. #parkinsonslookslikeme #parkinsonsdisease #hope #hopetheory #parkinsonsresources #stemcellresearch #stemcell #stemcelltransplant #stemcellstransplant #parkinsonsdiseasefoundation #michaeljfox #togetherforsharon #parkinsonsdiseaseawareness #FUYOPD #yopdnetwork #abbvie #michaeljfoxfoundation @parkinsondotorg @michaeljrfoxorg @yopdnetwork

The recent evidence on the burden of cough in IPF and other ILDs underscores the need for consistent, objective measurement. Cough remains a disruptive symptom that greatly impacts patients' quality of life. https://bit.ly/4gGytPB At Strados Labs, we see an opportunity to use standardized tools like the RESP Biosensor to provide objective, direct data on cough severity, which could serve as endpoints in IPF studies to better evaluate treatment efficacy and disease progression.   #IPF #ILD #cough #coughmonitoring #respiratoryhealth