Better’s Post

The 7th World Bronchiectasis Conference featured a pivotal discussion among leaders of bronchiectasis registries from the US, Europe, China, India, South Korea, and Australia. These registries, extensive databases with critical patient and disease information and their complementary biobanks which store biological samples, have amassed substantial data over time. Data from the European registry, EMBARC, has already been used in over 40 publications! Recognizing the potential of combined efforts, moderator Dr. Doreen Addrizzo-Harris proposed a collaborative research approach across these registries. Moderator Dr. James Chalmers echoed this sentiment, suggesting a joint publication discussion at the next conference as a tangible goal. Audience members expressed interest in accessing registry data for their own research, a request met with encouragement from Dr. Chalmers. He added that with tens of thousands of patients contributing their data, the medical community now bears the responsibility of using this resource to improve patient care. The emergence of the Bronchiectasis Care Center Network (CCN) in the United States, with a potential of 350 centers, will be a significant development in data collection. Dr PJ McShane noted that expanding beyond the current institutions and their data banks to include public hospitals will provide a more comprehensive understanding of bronchiectasis and NTM and its impact on minority populations. Access to care has been a lifelong concern of mine. From my public health background and current engagement with people all over the world who have BE and NTM, I know there are many who do not get the care they need to fight these diseases. If you have the opportunity, please join me in participating in registries and data banks. It’s very satisfying to be involved in this global effort—and hopefully in the discovery of a cure.🫁✨ COPD Foundation www.letsbecleartoday.com #bronchiectasis #ntmlung #lunghealth #PrimaryCiliaryDyskinesia #respiratoryhealth #asthma #COPD #lungdisease #medicalresearch #clinicalTrials #chronicillness #cooperation #publichealth #patientadvocacy #healthinnovation #collaboration #patientparticipation

🌍 Health Resources for Everyone 🌍 Understanding your health should be simple and accessible. That’s why the FIBROTARGET factsheet, developed with European Federation of Crohn's and Ulcerative Colitis Associations (EFCCA), is now available in English, Dutch, Spanish, German, French, and Italian. These resources provide critical insights on IBD-related fibrosis to more people than ever before. 🌟🔬Get informed and feel empowered to be part of fibrosis and fibrostenosis research. Download the factsheet in your language here➡️https://loom.ly/yW8mEBc #IBD #Translations #FIBROTARGET #PatientEmpowerment With thanks to contributions from: Crohn en Colitis ulcerosa vereniging vzw, Asbl Crohn RCUH, AMICI Italia - Associazione nazionale per le Malattie Infiammatorie Croniche dell'Intestino, ACCU ESPAÑA, DCCV e.V. Project Partners: European Federation of Crohn's and Ulcerative Colitis Associations (Isabella Haaf), Teamit (Eva Molero Romen, Gisela Pairó, Sarai Rodríguez Navarro, Fabio Riefolo, PharmD - PhD, Sofia Sintoris), UZ Leuven KU Leuven (Severine Vermeire, Gianluca Matteoli), Motilent (Alex Menys, Beth Fisher), Hospital Clínic de Barcelona, Amyndas Pharmaceuticals, Universitätsklinikum Erlangen, Crohn's & Colitis Foundation, Crohn's & Colitis UK, Crohn's and Colitis Young Adults Network

💡 The momentum toward preventive healthcare is real, with advancements in early diagnosis and treatment for #type1diabetes highlighting a new era in medicine. This trend is not unique to diabetes; early intervention strategies are now also proving effective in conditions like Alzheimer’s disease, where early detection can improve outcomes and alter the course of disease progression. To truly embed preventive medicine in our healthcare systems, organisational, health-economical and regulatory adaptations are essential. Sweden, with its innovative spirit and robust healthcare system, is uniquely positioned to champion this preventive paradigm, setting a global example. However, making preventive medicine a reality requires far-reaching collaboration across clinical, regulatory, and policy domains. Discussing the requirements for introducing preventive and precision medicine for autoimmune diseases is a focus of the ASSET partnership (www.asset.healthcare), a Vinnova project, coordinated by Diamyd Medical. ▶️ On the 26th of November, ASSET is organizing a conference to discuss and explore "The future of disease screening". ◀️ We are honored to welcome Prof. chantal mathieu from KU Leuven as the keynote speaker. 💙 The Keynote will be followed by two panel discussions with distinguished guests, including Helena Elding Larsson, Thomas Magnusson, Thomas Lindén, Lina Nordquist, and will be moderated by Hans Winberg. Join us in Stockholm to explore how Sweden could take a leading role in creating a proactive, prevention-focused system. Let’s work together to shape a future where healthcare predicts and prevents disease rather than just treating it! 🔽 Link for registration: https://lnkd.in/dX8dSGfw #precisionmedicine #prevention Diamyd Medical Mainly.AI Leading Health Care Foundation Lund University Diabetes Centre LUDC Sahlgrenska Academy at University of Gothenburg Region Örebro län National Diabetes Registry Sanofi

One of the posters we'll be presenting next week at the ISPOR Europe Conference will focus on #NASH and #MASH:, "The Impact of Delayed Treatment in Patients with Noncirrhotic Non-Alcoholic Steatohepatitis (NASH) with Moderate to Advanced Fibrosis."   This work highlights our expertise in modeling complex conditions like NASH, where the timing of treatment initiation can significantly impact patient outcomes. By examining the effects of delayed treatment, we’re shedding light on the critical decisions that patients, clinicians, and payers face in managing progressive liver diseases.   Our team has a strong track record in advanced modeling techniques and health economics evaluations for challenging disease areas. We’re proud to be pushing the boundaries of evidence generation for better healthcare decision-making.   If you're attending, come by to booth 620 and let’s connect! We’d love to discuss the implications of our findings and how our expertise in complex modeling could support your projects.   #HealthEconomics #ModelingExcellence #NICEsubmission #PharmaResearch #LiverDisease #HealthcareInnovation #OptimaxAccess #ISPOR #ISPOREurope2024 ISPOR—The Professional Society for Health Economics and Outcomes Research

#Breaking: Two new papers published in MS Journal highlight the impact of global collaboration on research toward finding a cure for MS! ➡️ Updated Pathways to Cures Roadmap Pathways to Cures is the most collaborative MS research effort of our time. New updates include refinements developed by researchers and stakeholders across the globe, new research advancements, key elements to accelerating research progress, and more. ➡️ Global Research Landscape Analysis The Global Research Landscape Analysis examined ongoing MS research projects so organizations can continue to focus on the most impactful research to Stop MS through early detection and treatment, Restore function and repair damage from the disease, and End MS through prevention. LEARN MORE 👉 https://bit.ly/3XsF8FI MS Australia CEO Rohan Greenland says that as a partner and joint leader in this important global initiative, MS Australia remains steadfast in its commitment to collaborating with other MS organisations to fast track the cures for MS. “The updated Roadmap is a reflection of the advancements being made in the area of MS Research and our increased understanding of the disease, and in turn, the need, not just for an updated roadmap, but continued international collaborative research efforts that will get us down the pathways to cures as fast as possible,” Mr Greenland said. #MS #multiplesclerosis #MSresearch #MSawareness

🌍 FIBROTARGET Factsheet now available in multiple languages! 🌍 Understanding your health should never be limited by language. That’s why we’re excited to share that our FIBROTARGET factsheet is now available in English, Dutch, Spanish, German, French, and Italian—making our insights on IBD-related fibrosis accessible to even more of the community. Developed in collaboration with the European Federation of Crohn's and Ulcerative Colitis Associations, this resource is designed to: ✅ Provide clear, concise information on our project’s goals and progress. ✅ Keep you informed about the latest research on intestinal fibrosis and fibrostenosis. ✅ Empower the IBD community with resources in your language. Let’s break barriers together and ensure everyone feels included and informed. Download the factsheet today and join us in advancing the future of IBD care! 👉 https://loom.ly/yW8mEBc With thanks to contributions from: Crohn en Colitis ulcerosa vereniging vzw, Asbl Crohn RCUH, AMICI Italia - Associazione nazionale per le Malattie Infiammatorie Croniche dell'Intestino, ACCU España, DCCV e.V. Project Partners: European Federation of Crohn's and Ulcerative Colitis Associations (Isabella Haaf), Teamit (Eva Molero Romen, Gisela Pairó, Sarai Rodríguez Navarro, Fabio Riefolo, PharmD - PhD, Sofia Sintoris), UZ Leuven KU Leuven (Severine Vermeire, Gianluca Matteoli), Motilent (Alex Menys, Beth Fisher), Hospital Clínic de Barcelona, Amyndas Pharmaceuticals, Universitätsklinikum Erlangen, Crohn's & Colitis Foundation Crohn's & Colitis UK Crohn's and Colitis Young Adults Network #IBD #FIBROTARGET #PatientEmpowerment #EFCCA

Mariposa Journal Summer 2024 Edition is Now Out!🙌🦋 Dive into the latest issue, where we spotlight the incredible efforts of patient associations during World PH Day on May 5th. Under the inspiring slogan "Breathing in Unity for the Global PH Community," over 40 patient associations worldwide joined PHA Europe in a unified awareness campaign, sharing impactful content across social media and celebrating the achievements of all PH patients. Get your copy of Mariposa Journal today to discover the remarkable activities and stories from WPHD 2024. Plus, explore a host of other exciting events and initiatives that are making a difference in the PH community. Don't miss out on these powerful stories and celebrations of unity! This issue features articles from PHA USA (Pulmonary Hypertension Association), Nigeria, Peru and the Pulmonary Hypertension Association of Canada, all of which joined us for World PH Day 2024. Additionally, it is particularly heartening to read the reports from our new associated members in Argentina, who contributed significantly to the global awareness efforts. Our World PH Day project focuses on three key goals: raising awareness through campaigns and media to encourage early diagnosis, building a global support network for patients and caregivers, and advocating for better healthcare policies, research funding, and access to treatments. We are proud of the impactful results from World PH Day 2024: 🔹 Over 3.5 million users engaged with PHA Europe's social media channels during the campaign 🔹 4.2 million impressions across Facebook and Instagram 🔹 An additional 95,000 users from LinkedIn and X, with nearly 45,000 reached organically ➡Download your digital copy here: https://bit.ly/4dbUMd7 #Mariposa #pulmonaryhypertension #PHAEurope #PAH #WPHD2024 #awareness #patientempowerment #advocacy #LungHealth #RespiratoryHealth #PHAEurope #RareDisease Hipertensión Pulmonar Argentina PH Belgium - Pulmonale Hypertensie vzw Hipertensión Pulmonar España ORG Pacientes Fundación Contra la Hipertensión Pulmonar Asociación Nacional de Hipertensión Pulmonar ANHP Stichting Pulmonale Hypertensie / PH Association the Netherlands PH Serbia AIPI Italian Pulmonary Hypertension Association Fundación Ayúdanos a Respirar Sociedad Latina de Hipertensión Pulmonar HAPCHI Asociacion Chilena de Hipertension Pulmonar Pulmonary Hypertension Association of South Africa

I will be presenting groundbreaking survey data at the National Medical Association's Annual Conference and Scientific Assembly. This is the largest survey of ANY physicians on this topic with over 1,190 AA/Black physicians surveyed on Multi Cancer Detection tests and potential impact on health and specifically health disparities. My research team and I are very proud to have worked with National Medical Association and other orgs to develop, distribute, evaluate this scientific survey and subsequently submit with authors the article which gives invaluable insight to this topic. Garfield Clunie and I will roll this data and disseminate an early look at upcoming article that will appear in the upcoming Journal of the National Medical Association (JNMA). This will be live streamed in conjunction with National Medical Association and BlackDoctor.org email: drsharonao@carlden.com for more info on the upcoming publication and survey. Article appearing in the JNMA: Physicians’ perception on using a multi-cancer early detection blood test to reduce disparities in cancer screening Garfield A. Clunie , Sharon D. Allison-Ottey , Joy D. Calloway, Marie L. Borum JOIN us for this discussion; honored to be part of this entire panel. #MCDtest #cancerhealthdisparities #healthequity #cancersucks #cancerearlydetection #innovationincancer #mced #mcd #drsharonallisonottey #drsharon #healthadvocacy #nationalmedicalassociation #nma #earlydetectionsaveslives

🎯 Co-first author - next publication 😍 "Engagement of a community advisory group to shape and build up participation in TB research" Community advisory group (CAG) meetings serve as a conduit for dialogue between researchers and the community. By identifying community concerns and expectations, researchers and investigators can effectively tailor their approaches to address the community's needs, facilitating participant enrolment, retention, and adherence.   Our key findings: 🔹 CAG participants commented on their preference for TB screening tests. 🔹 Chest X-rays and blood tests were more acceptable than sputum tests. 🔹 Clinical studies requiring fewer hospital visits would be preferred, even if this meant a greater reliance on blood sampling. Le Thi Thu Thao #TB #CAB #Engagement #PublicHealthAction