Samuele Butera’s Post

TODAY is #chronicdiseaseday! What better way to celebrate the progress we have made in addressing chronic diseases, including many #rarediseases, than with a Congressional luncheon celebrating the advances in #chronicdisease #research and #care. It was great to hear from the Centers for Disease Control and Prevention and The National Institutes of Health, including the National Center for Advancing Translational Sciences (NCATS) and National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) ! Amazing to hear how these federal agencies are supporting groundbreaking research to better understand the burden of and risk factors for chronic diseases (and how to prevent them), translate innovative research into life-altering therapies more quickly and effectively, and use scientific discovery to address common problems that are shared by patients with almost all diseases - like pain or sleep. This is why we at #NORD the National Organization for Rare Disorders are proud founding members of the NCATS Alliance and strongly support the amazing work done across #NIH. The briefing appropriately emphasized #rarediseases - after all, the unmet medical need is undeniable; more than 95% of rare diseases have *NO* FDA approved therapies. A big thank you to Jess Myers for sharing your story and for closing today’s luncheon with the #patientperspective - the importance of community and connection, the way in which #research has rewritten the story for so many patients, and the remaining unmet needs including #steptherapy, other #utilizationmanagement, and treatment-resistent disease subtypes to name just a few. And a big thanks to Good days for hosting this amazing event.

There are almost 12 million people in Europe living with psoriasis. Each with a different experience and facing challenges due to the varying levels of support with day-to-day disease management. The daily experiences of those living with this chronic skin condition go beyond physical symptoms, encompassing emotional tolls and additional challenges faced by thousands each day. The variation in experiences largely stems from the difference in access to adequate healthcare, knowledge and support. European Psoriasis Week provides an opportunity to bring the issue of access to the forefront of the conversation. EUROPSO, the European Federation of Psoriasis Associations, is calling attention to the urgent need for complete access to treatment for individuals living with psoriasis across Europe. At @J&J Innovative Medicine Europe, Middle East & Africa (EMEA), our focus is not only to improve the lives of individuals affected by psoriasis, but to ensure that they have the support they need. We strive towards this by continuously researching and innovating, fostering collaborations and advocating for improved patient access to care. This week serves as a time to share progress made in psoriasis management, and a crucial reminder of the patient experience, the disparities in access, and the work we still have left to do. #EuropeanPsoriasisWeek

Today marks Rare Disease Day, a significant moment to unite with others in the commitment to the 300 million people worldwide, particularly those within the ALSP community, who face the challenges of living with rare diseases every day. This day and every day our focus is on advancing medical research, improving patient care, and fostering a global dialogue on the importance of early diagnosis and treatment options for rare neurodegenerative diseases like ALSP. Rare Disease Day underscores the necessity of bridging gaps in medical knowledge and resources, ensuring that individuals with rare diseases receive the attention and care they deserve. We invite our colleagues in the medical and research fields to join us in acknowledging Rare Disease Day. Let's use this opportunity to reaffirm our dedication to the research, diagnosis, and treatment of rare diseases, including ALSP, to improve outcomes for patients worldwide. Together, we can make a significant impact on the lives of those affected by rare conditions. - #RareDisease #RareDiseaseAwareness #RareDiseaseAwarenessDay

Cardiovascular diseases (CVD) are the leading cause of morbidity and mortality in the world ! Unfortunately chronic degenerative diseases are increasing and multi morbidity is now a challenge to health care professionals. Cardiovascular problems may aggravate kidney, liver, respiratory and endocrine problemas and vice-versa. There is need for a multi morbidity approach to reduce disease burden. Preventive CVD therapies can make a lot for people with other diseases. There is need for multidisciplinary approaches to reduce the burgeoning burden of diseases with not only different medical specialties working together but true multi professional health care teams. I'm honored and happy to be invited by the World Heart Federation to participate and represent Brazil on the WHF's Multiple Morbidity and Integrated Care Forum. There is need for multidisciplinary approaches to reduce the burgeoning burden of chronic diseases. #prevention #cardiovascular FMUSP Oficial, Instituto do Coração - InCor HCFMUSP, Hospital Albert Einstein, International Atherosclerosis Society (IAS)

Every 5 minutes, someone dies from a lung condition in the UK. And yet there’s a lack of political will to fund the research that could save these lives. Today, the Lung Research and Innovation Group (LRIG) have set out 10 priorities the government and other research funders needs to take seriously to fix the lung research pipeline and fix the nation’s lung health. If the government and other key stakeholders invest in the 10 respiratory research priorities outlined in this report, we will address the largest driver of winter pressures in the NHS, make huge savings for the healthcare system, and serve the needs of the 12 million people in the UK who will develop a lung condition during their lifetime. LRIG is made up of expert organisations and individuals determined to accelerate in lung research and deliver better outcomes for people living with a lung condition. The group is convened by Asthma + Lung UK and co-chaired by Dr Samantha Walker, Director of Research and Innovation at A+LUK, and Professor Ian hall, University of Nottingham. Read and download the report: https://bit.ly/3UtpBTj

Enjoy the latest edition of ISN-ACT Global Trials Focus (GTF), a monthly list identifying and summarizing recent interesting trials relevant to kidney disease. Each trial is reviewed in context and assessed for its risk of bias in key areas ➡ https://ow.ly/z4H750T1ZWX ➡️ The TOM of this month goes to the FLOW trial, showing the FLOWing Benefits of Semaglutide in People with Type 2 Diabetes and CKD published NEJM. ➡️ Spironolactone didn't show any benefit on Kidney Function in Kidney Transplant Recipients. The SPIREN trial results were published CJASN. This scientific resource is made available to the global kidney health community thanks to the continued support of ISN Members. Renew/join the ISN and help us advance kidney health - together ➡️ https://ow.ly/ByKk50T1ZWY #ThisIsISN - Advancing kidney health worldwide. Together.

So Excited to be welcoming leading international asthma researchers and clinicians tomorrow, here in Copenhagen! Two days of working together on how we can solve the key challenges for people with the most severe and life-threatening asthma: Setting the bar higher, aiming for disease remission - and ultimately preventing the development of severe asthma. In this era of precision medicine, we can aim higher, and strive to reset the overactive immune system that drives inflammation, symptoms and asthma attacks. A hopeful era, where patients, clinicians and scientists need to work closely together to reach these goals. The Severe Asthma Coalition consists of five major international research consortia, uniting to drive our ambitions forward, through developing novel treatment strategies for severe asthma: U-Biopred, ISAR, 3TR, SHARP and NORDSTAR - Fan Chung,Ian Adcock, Sven Erik Dahlen, David Price, chris brightling, Florence Schleich, Hilary Hodge, Apostolos Bossios Cant wait to see you all tomorrow! #Severeasthma #Precisionmedicin #remission #prevention #betterlungsbetterlife

This weekend the XVII National Course on Interstitial Lung Diseases and the VIII São Paulo Conference on Interstitial Lung Diseases took place in São Paulo. In my humble opinion: An extremely organized event, with national and international speakers and key opinion leaders. An event of great importance and also an excellent time to exchange experiences, to share possibilities in Clinical Research and also the opportunity to create new connections and increase our networking. My field partner, Jaqueline Alves and I (representing ODC) were very excited to attend this successful event. This message, is for You! Brazilian Pulmonologist, who is frequently faced with the management of patients diagnosed as Pulmonary Sarcoidosis… Have you heard about Efizofitmod? It’s a new therapeutic possibility for ours Brazilian Patients. Do you want more information about it? It will be a pleasure to have this conversation with you and clear your doubts. Just get in contact with us to learn more about. #ClinicalResearch #Sarcoidosis #OrphanDC

Great to see growing international momentum around screening high-risk populations! Given how under diagnosed kidney disease is, it's a no brainer. It can improve the lives of millions and countless health economic studies have shown this to be cost effective for health systems too. The key question is.... given the capability exists. Why is this approach not already being implemented at scale globally? Keen to hear your thoughts on the barriers, and what you think we can do to break them down. MyRenalCare in partnership with Nova Biomedical are ready to deliver screening at scale....just say when and where! Don’t miss out on an expert discussion on 25 September, which will address the growing burden of cardiovascular, renal and metabolic diseases, including CKD, and the importance of driving global recognition around the interconnected nature of these conditions. Register to attend online to be a part of making the change #ForKidneyHealth: https://bit.ly/4eb7Joh #KidneyDisease #UNGA79

The power to think globally and act locally! How a global strategy and project can be activated locally in different ways to move the needle for patients in different healthcare systems. Also, but definately not less important, patients leading a multistakeholder discussion to raise their voices about their unmet needs and being able to “co-create” solutions or next steps with health authorities. #globalhearthub #institutoladoalado #patientledresearch #patientengagement #advocacy #multistakeholderdiscussion