NIH Clinical Center (CC)’s Post

More and more patient and patient representatives involvement in reasearch and collaboration at eye level! That is so important for the diagnostic & treatment of people with #myositis! #gcom #globalconferenceonmyositis

Orthopaedic triage. A brilliant strategy for PT professionals and health systems.

𝐉𝐔𝐍𝐄 𝟒 𝐖𝐄𝐁𝐈𝐍𝐀𝐑: The healthcare and research establishment is hard enough to navigate, but when your child is sick, it can be particularly daunting. Cure Mito Foundation is a patient advocacy organization that advances #LeighSyndrome research and supports affected families worldwide. By implementing the Multi-Regional Clinical Trials Center of Brigham and Women's Hospital and Harvard (MRCT Center) Clinical Research Glossary on their website, they empower families with critical, plain language resources to make informed decisions about the care of their loved ones. Learn more about how to implement this free resource in your patient/participant materials at our June 4 webinar: 𝐀𝐜𝐭𝐢𝐨𝐧 𝐚𝐧𝐝 𝐈𝐧𝐟𝐥𝐮𝐞𝐧𝐜𝐞: 𝐈𝐦𝐩𝐥𝐞𝐦𝐞𝐧𝐭𝐢𝐧𝐠 𝐭𝐡𝐞 Multi-Regional Clinical Trials Center of Brigham and Women's Hospital and Harvard (MRCT Center) 𝐂𝐥𝐢𝐧𝐢𝐜𝐚𝐥 𝐑𝐞𝐬𝐞𝐚𝐫𝐜𝐡 𝐆𝐥𝐨𝐬𝐬𝐚𝐫𝐲 𝐚𝐧𝐝 𝐘𝐨𝐮𝐫 𝐑𝐨𝐥𝐞 𝐢𝐧 𝐏𝐮𝐛𝐥𝐢𝐜 𝐑𝐞𝐯𝐢𝐞𝐰. Register here: https://bit.ly/3VmbhOe Sophia Zilber 🌺 is dedicated to supporting and empowering families that #LeighSyndrome impacts. Join us on June 4th as she shares her personal experience and why Cure Mito Foundation includes the Multi-Regional Clinical Trials Center of Brigham and Women's Hospital and Harvard (MRCT Center) Center’s Clinical Research Glossary as part of its educational resources. #PatientAdvocacy #LeighSyndrome #HealthcareResources

Today, the Society is participating in the 2023 Rally for Medical Research along with other medical societies and patient advocacy groups that are sending members to Capitol Hill. We are urging lawmakers to prioritize medical research funding and protect the National Institutes of Health (NIH) from budget cuts in FY24: https://bit.ly/3L9RgFT Our staff are also participating on social media by sharing how federal support of medical research has positively affected their lives or the lives of their loved ones. The NIH provides an avenue of hope with life-saving research. Funding is crucial for our researcher members who depend on federal funding to run their laboratories. It is critical that all senators and representatives hear from their constituents now about the importance of NIH and the value of endocrine-related research. We have have created a social media toolkit for everyone who wants to take action and amplify this message: https://bit.ly/467DzOQ     #IRally #FundNIH #RallyMedRes #FundHealth 

🔬 𝙃𝙚𝙡𝙥 𝙎𝙝𝙖𝙥𝙚 𝙍𝙚𝙨𝙚𝙖𝙧𝙘𝙝 𝙋𝙧𝙞𝙤𝙧𝙞𝙩𝙞𝙚𝙨 𝙛𝙤𝙧 𝙒𝙤𝙢𝙚𝙣'𝙨 𝙃𝙚𝙖𝙡𝙩𝙝 𝙞𝙣 𝙈𝙪𝙡𝙩𝙞𝙥𝙡𝙚 𝙎𝙘𝙡𝙚𝙧𝙤𝙨𝙞𝙨 📋 The International Advisory Committee on Clinical Trials in MS Women’s Health working group are conducting a study to gain further insight into the most important questions in six broad areas for future research on Women’s Health in MS. The project is seeking insights from a range of stakeholders, including people living with MS, healthcare providers, researchers and patient advocacy groups. Participation involves completing an anonymous 5-minute survey about the questions you consider important for future research on Women’s Health in MS. To participate in this survey, please follow this link 👉 https://bit.ly/3qWthCr The International Advisory Committee on Clinical Trials in Multiple Sclerosis is jointly supported by the European Committee for Treatment and Research in Multiple Sclerosis ECTRIMS and the US National MS Society. #MS #multiplesclerosis #Research #womenshealth

🌟 Empowering Patients: EURACAN's Vital Partners! 🤝 At EURACAN, patients, caregivers and patient advocates are our driving force. As a patient-centered network, their vital role in shaping our mission is irreplaceable. 💙 Key Collaborators: Patients, their caregivers and their representatives played a crucial role in creating EURACAN. Today, they remain as key partners, working with us to improve accessibility, clinical excellence, and patient outcomes. 🗣️ Voices of Impact: EURACAN's patient advocates, the "ePAG advocates," represent the European Patient Advocacy Group (ePAGs) for rare solid cancers in adults. They provide invaluable perspectives on patients' needs and expectations, working closely with our domains and Task Force leaders. 🤝 Coordinated Efforts: EURORDIS (Rare Diseases Europe) skillfully coordinates the ePAG advocates' contributions, ensuring cohesive collaboration. Together, EURACAN and the rare adult solid tumour patient community stand strong, empowering each other for better care and outcomes. 🌍🌟 #EURACAN #EmpoweringPatients #ePAGAdvocates #PatientCentered #Collaboration #RareCancers #BetterOutcomes #TogetherWeStand

Is your organization passionate about addressing rare disease disparities and inspiring the next generation of medical professionals? The Call for Host-Site applications for the RDDC Fellowship is now open until March 15, 2024, at 11:59 pm EST! This program aims to empower fellows to tackle rare disease challenges, with emphasis on achieving greater equity for all. By collaborating with rare disease organizations, host sites provide invaluable experiences for fellows to make a difference. If your organization is interested in becoming a host site, apply here: https://lnkd.in/ei56vbjr Benefits of Hosting an RDDC Fellow: - Address unmet community needs - Infuse additional capacity and expertise - Cost-effective collaboration - Expand your network of rare disease partners - Inspire the next generation of healthcare professionals Help us spread the word by sharing this opportunity with other organizations who might be a great fit! Together, let's make a difference in rare disease advocacy and healthcare. #RareDisease #RDDC