bluebird bio’s Post

We're all getting older. That's an irrefutable fact that we all have to adapt to. But here's something to consider. What does it mean to get older while living with a chronic disease like MS? This aspect of life with MS is poorly understood and is the reason that the International Advisory Committee on Clinical Trials in MS - with the support of ECTRIMS and the National MS Society - brought together a group of international experts to consider critical questions like: 👉Does the MS disease process change as we get older? 👉What should be considered when diagnosing MS in older individuals? 👉Are current MS treatments effective in older people with MS? 👉How do clinical trials need to change to incorporate older individuals? 👉How do we ensure that the perspectives of older people with MS are incorporated into the design of research studies? 👉How does the treatment and care need to evolve as people with MS age? We had rich and deep conversations that will inform the development of action plans on this emerging aspect of #MS. If you would like to hear more about the workshop be sure to register for a webinar hosted by ECTRIMS on 30 April, at 16:00 CEST I'll be joined by keynote speakers, Jennifer Graves, Eva Strijbis, and Xavier Montalban. ✅ Register for free here ➡️ https://lnkd.in/eBjk8bsH. Thanks to all of the conference participants, and my planning committee colleagues, Anneke Van der Walt, Frederik Barkhof, Xavier Montalban, and Peter Calabresi. Together we are stronger. #MS #multiplesclerosis

Racial and ethnic disparities in stroke care exist, and we recognize the need to close the gap to provide equitable access, treatment and outcomes for all. To combat this, we're proud to share that we've published a new Executive Report titled “Review of Programmatic Interventions, Best Practices and Recommendations Aimed at Closing the Racial and Ethnic Disparity Gap in Stroke Care,” which provides a review of best practices and recommendations for stroke care teams. Building upon our findings, we also launched our globally accessible digital health equity hub containing applicable research, interactive assets, and progress evaluation tools to assist in closing the gap on care disparities in stroke. This furthers our unwavering commitment to strengthen the systems of stroke care: https://bit.ly/4bx3qCn #StrokeAwarenessMonth #Cerenovus #JNJMedTech

In early May, Women As One joined key partners Medtronic and WomenHeart: The National Coalition for Women with Heart Disease on Capitol Hill to advocate for improved cardiac health in women. Here are 4 key takeaways from Women As One’s Erika Squeri. 1⃣ Messaging matters. The issues that get discussed the most tend to be the ones that get addressed. 2⃣ Heart health affects everyone. We were struck by the number of people we met with who had personal stories of losing women in their lives to heart disease. 3⃣ Representation matters. We had rich discussions about the lack of female representation in cardiology and its negative effects on patient outcomes. 4⃣ Action must happen now. Everyone we met with agreed women’s health advancement can no longer wait. We’re energized by our time in on the Hill. Read the full article below ❣️ https://lnkd.in/dkkMEfTj Help us change the future of women’s healthcare when you sign up to join our community: https://lnkd.in/dY7AmGw4 #WomensHealth #HeartHealth #HealthEquity #CapitolHill Roxana Mehran Sharonne Hayes Nina Goodheart Adam Pick HeartValveSurgery.com

The U.S. Senate HELP Committee held a hearing on Long COVID yesterday to discuss advancing research and improving patient care. #MEAction, Body Politic, and Long COVID Justice applaud the HELP committee for hosting the hearing, but also call Congress to take action. See newest press release here: https://lnkd.in/ebVJ35Gc Nearly all of the Senators on the committee attended the hearing with all of the Democrats present, and 6 of the 10 Republicans appearing. The room was packed with patients and allies who spilled over into the overflow room. Senators shared their own experiences being affected by Long COVID, and heard testimony from patients, experts and a parent of a child with Long COVID. Patient advocate Angela Vázquez testified about her experience with Long COVID, and emphasized the need to ground Long COVID research in the expertise that already exists on infection-associated diseases like myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS). Studies show that nearly half of the Long COVID community meets the diagnostic criteria for ME/CFS. “Research [on Long COVID] needs to build on the existing research,” said Vázquez. “Long COVID is not a new thing. ME/CFS is not new. Dysautonomia is not new. Mast cell activation is not new. Those conditions have historically been very under-funded compared to the disability that they have contributed to over generations,” Vázquez is the former President of Body Politic, a Long COVID grassroots organization that is now a project of #MEAction. See link above for further quotes and link to watch hearing. #pwME #LongCovid #MyalgicEncephalomyelitis #MECFS #Senate #PressRelease

Several years ago, Johannah as my patient shared her deeply personal and transformative journey managing her chronic pain and navigating the complexities of patient care. She felt that her expeiences had important messages for others, patients and providers alike. (Here is the story in case you aren't familiar: https://lnkd.in/eqCpjC6p) For patients who find Johannah's story relatable, I hope it makes them feel less alone and gives them insight into how they can navigate the same challenges. However, I think her story also provides insight for providers and how they can better handle these situations. To me, one of the biggest takeaways is that truly listening to patients, validating their concerns, and collaborating with them on a treatment plan leads to better patient outcomes. This story is a call to action for healthcare professionals to focus not only on procedures but also on developing strong communication skills and fostering patient-centered care. By doing so, we can bridge the gap between patients and providers, ensuring that no one feels helpless in managing their health. https://lnkd.in/eqwhxegp #Gastroenterology #GastroHealth #HealthcareProvider #PatientOutcomes #PatientExperience

Celebrating International Day of Older Persons with Our First Post! Today, on International Day of Older Persons, we honor the incredible contributions and enduring wisdom of our senior community. As we launch our official LinkedIn page, we are excited to share how Biosytech Medical Laboratory is dedicated to supporting elder health through advanced diagnostic services. Why Elder Health Matters: As our loved ones age, their health needs become increasingly complex. Early detection and accurate diagnosis are essential for managing age-related conditions and ensuring a high quality of life. Our laboratory is here to provide comprehensive, compassionate care tailored to these evolving needs. How We Support Senior Health: Early Detection: Advanced tests to identify potential health issues early. Tailored Services: Specialized diagnostics addressing the unique concerns of older adults. Reliable Results: Precision and timeliness in every test, aiding in effective treatment planning. This is just the beginning! From today, our LinkedIn page will be your go-to source for updates on our services, insights into our diagnostic processes, and information on how we contribute to health and wellness in our community. Got questions or need assistance? Feel free to connect with us right here. We are here to help and look forward to engaging with you. #WorldEldersDay #SeniorHealth #DiagnosticExcellence #HealthcareInnovation #StayConnected #Biosytech #Medicallaboratory

Here’s to another 10 years of great work with The National Academies of Sciences, Engineering, and Medicine Rountable on Obesity Solutions.

Small steps bring us closer to success. Change is happening. The American Heart Association removed race from a commonly used heart disease risk calculation. OBGYNs are no longer including race as a risk factor when determining if a pregnant woman should attempt a vaginal birth after a C-section. The American Thoracic Society is urging physicians to replace race-based lung function evaluations. The National Kidney Foundation (NFK) and American Society of Nephrology announced the African American/Black race-based indicator will be removed from the KDPI calculation. Every stride we make in reforming the #healthcare system brings us one step closer to achieving health equity for all. Let’s celebrate these victories, no matter how small, as they demonstrate progress towards more inclusive healthcare delivery. Join KC Health Collaborative as we collaborate with community partners to dismantle racial biases in healthcare and ensure equitable access to healthcare for all. Let’s get to work. ** Follow KC Health Collaborative to stay up-to-date about our efforts in fostering health equity and community connections in the Kansas City region. #healthequity #kansascity #inclusivehealthcare

🗣️ Discussing is vital for awareness and awareness is vital for research & development, and, in the end, access to better treatment and quality of life. In 2018, #Discuss was the name given to an extensive survey of caregivers of patients with Dravet syndrome on experiences of diagnosis, seizure burden, management, social and financial impact, and health services use, administered online in 10 languages. With over 580 unique responses from caregivers of pediatric (83%) and adult (17%) patients with Dravet syndrome (aged <1–48y), the survey remains to date a milestone for the Dravet community and an impactful exercise of collaboration between members of the Dravet Syndrome European Federation. 👉 One of the main findings derived from the responses was that less than 10% of patients were seizure free, but the full report - available in the comments - includes many more valuable data. Six years after Discuss, a world free of Dravet Syndrome still seems far from being an achievable target, however it remains the vision of our Federation. Join us in celebrating 10 years since our foundation and remember the cornerstones of our activity. 🎆 #DSEF10 #DravetSyndrome #Fight4DravetPatients

🌟 World Haemophilia Day: Championing Equitable Access for All 🌟 Today, April 17th, marks World Haemophilia Day, a momentous occasion dedicated to raising awareness and advocating for those living with bleeding disorders worldwide. The theme for this year is "Equitable access for all, recognizing all bleeding disorders," Haemophilia, a rare but serious bleeding disorder, affects the body's ability to clot blood effectively. Those living with haemophilia face unique challenges and often require specialized care and treatment to manage their condition. However, they are not alone. Today, i stand in solidarity with individuals living with all bleeding disorders, acknowledging their journeys and championing their right to equitable access to healthcare. As members of the global community, we have a responsibility to amplify our voices and advocate for accessible healthcare for those living with bleeding disorders. We must urge policymakers, healthcare providers, and communities to prioritize equitable access to care, ensuring that no one is left behind due to barriers such as geographical location, socioeconomic status, or lack of resources. Together, let us raise our voices, spread awareness, and advocate for equitable access to healthcare for all individuals living with bleeding disorders. Our collective efforts can pave the way for a brighter, more inclusive future where every individual can access the care they need to live healthy and fulfilling lives.