EURORDIS-Rare Diseases Europe’s Post

🧠💎 Exciting Collaboration Alert! 💎🧠 We believe in the power of collaboration to advance knowledge and understanding in medical research. Recently, our team had the incredible opportunity to partner with a local church organization for a webinar on the importance of medical research within our community. 🌐👏🏾 The engagement was phenomenal, with insightful questions pouring in from participants. The exchange of knowledge was mutual, leaving both the presenters and the audience enriched by new insights into medicine. 💡⭐️ This collaboration not only strengthened our ties with the community but also deepened trust. It's moments like these that make our site truly unique. We're not just about research; we're about making a positive impact on the lives of those around us. 🌟👥 As sponsors and collaborators, we encourage you to seek out sites like ours—ones deeply connected to their communities, committed to education, empowerment, and giving back. Let's continue to work together to advance medical knowledge and make a meaningful impact! 💪🏾👩🏽⚕️🤝 #Collaboration #MedicalKnowledge #MedicalResearch #ClinicalTrials #CollaborativeMindsets #CommunityImpact #EmpowerEducateGiveBack

🌍 There are numerous ways to 𝐞𝐦𝐩𝐨𝐰𝐞𝐫 and 𝐞𝐝𝐮𝐜𝐚𝐭𝐞 the community about the vital role of clinical research. 🗝 One key approach is to 𝗶𝗻𝗰𝗿𝗲𝗮𝘀𝗲 𝗮𝘄𝗮𝗿𝗲𝗻𝗲𝘀𝘀 𝘁𝗵𝗿𝗼𝘂𝗴𝗵 𝗰𝗼𝗺𝗺𝘂𝗻𝗶𝘁𝘆 𝗼𝘂𝘁𝗿𝗲𝗮𝗰𝗵 𝗽𝗿𝗼𝗴𝗿𝗮𝗺𝘀. This could involve hosting informative workshops and seminars that explain the various stages of clinical trials, the rigorous safety protocols in place, and the potential benefits that research participants can experience. Equipping community members with this knowledge empowers them to make informed decisions about their healthcare and potentially become engaged volunteers in future studies. 🗝 Additionally, 𝗳𝗼𝗿𝗺𝗶𝗻𝗴 𝗽𝗮𝗿𝘁𝗻𝗲𝗿𝘀𝗵𝗶𝗽𝘀 𝘄𝗶𝘁𝗵 𝗹𝗼𝗰𝗮𝗹 𝗼𝗿𝗴𝗮𝗻𝗶𝘇𝗮𝘁𝗶𝗼𝗻𝘀, 𝘀𝗰𝗵𝗼𝗼𝗹𝘀, 𝗮𝗻𝗱 𝗵𝗲𝗮𝗹𝘁𝗵𝗰𝗮𝗿𝗲 𝗽𝗿𝗼𝘃𝗶𝗱𝗲𝗿𝘀 allows you to distribute educational materials and resources that highlight the importance of clinical research and how it can lead to life-changing breakthroughs.  🗝 Another impactful strategy is 𝐚𝐦𝐩𝐥𝐢𝐟𝐲𝐢𝐧𝐠 𝐩𝐚𝐬𝐭 𝐫𝐞𝐬𝐞𝐚𝐫𝐜𝐡 𝐩𝐚𝐫𝐭𝐢𝐜𝐢𝐩𝐚𝐧𝐭𝐬' 𝐯𝐨𝐢𝐜𝐞𝐬 𝐚𝐧𝐝 𝐬𝐭𝐨𝐫𝐢𝐞𝐬. By sharing their firsthand accounts of the process, the challenges they overcame, and the positive outcomes they witnessed, you can inspire others to overcome any hesitations and get involved. This humanizes the research endeavor and demonstrates the real-world impact it can have on individuals and communities. 𝗖𝗼𝗺𝗺𝘂𝗻𝗶𝘁𝘆 𝗲𝗻𝗴𝗮𝗴𝗲𝗺𝗲𝗻𝘁, 𝗲𝗱𝘂𝗰𝗮𝘁𝗶𝗼𝗻𝗮𝗹 𝗶𝗻𝗶𝘁𝗶𝗮𝘁𝗶𝘃𝗲𝘀, 𝗮𝗻𝗱 𝘀𝘁𝗼𝗿𝘆𝘁𝗲𝗹𝗹𝗶𝗻𝗴, 𝘆𝗼𝘂 𝗰𝗮𝗻 𝘁𝗿𝘂𝗹𝘆 𝗲𝗺𝗽𝗼𝘄𝗲𝗿 𝗮𝗻𝗱 𝗲𝗱𝘂𝗰𝗮𝘁𝗲 𝘁𝗵𝗲 𝗰𝗼𝗺𝗺𝘂𝗻𝗶𝘁𝘆 𝗮𝗯𝗼𝘂𝘁 𝘁𝗵𝗲 𝘁𝗿𝗮𝗻𝘀𝗳𝗼𝗿𝗺𝗮𝘁𝗶𝘃𝗲 𝗽𝗼𝘄𝗲𝗿 𝗼𝗳 𝗰𝗹𝗶𝗻𝗶𝗰𝗮𝗹 𝗿𝗲𝘀𝗲𝗮𝗿𝗰𝗵. 💜 #BWICR #communityeffort #diversifymedicine #healthcare #clinicalresearch #empower #educate

Empowering Our Communities Through Clinical Research 🧬✨ Community engagement is more than just a conversation—it’s about empowering, educating, and creating lasting change in how we approach healthcare. For too long, underrepresented communities have been left out of clinical research, but it’s time to shift the narrative and create access to opportunities that can change lives. Here are three impactful ways to engage and educate our communities on the benefits of clinical research: 1. Collaborate with Local Leaders: Partner with trusted community voices to host workshops, Q&A sessions, and informational events. This builds trust and ensures the message of the importance of representation in research resonates on a personal level. 2. Host Community-Centered Health Screenings & Trials: Offer free health screenings at local events and festivals, creating a bridge to discussing clinical trial opportunities. Bringing research directly to the people ensures they see and feel the immediate benefits. 3. Use Culturally Relevant Education: Tailor clinical research information with culturally sensitive language and imagery, ensuring that materials resonate and speak to the unique challenges of each community. By engaging with our communities, we create opportunities for better health outcomes, ensure our voices are heard, and pave the way for a healthier, more inclusive future. Let’s take a stand for diversity and equity in research together! 💡👩🏾⚕️🧑🏿⚕️ #CommunityEngagement #ClinicalResearchMatters #HealthEquity #DiversityInResearch #UnderrepresentedVoices #bwicr #clinicaltrial #clinicalresearch #clinicalresearcHER #clinicalresearchassociate

Did you know that up to 80% of clinical trials fail to meet their recruitment targets on time? It's a huge issue! 😲 Here are three mistakes to avoid when recruiting patients for your clinical trial: 1️⃣ Don't rely solely on traditional methods like flyers and direct mail. 2️⃣ Avoid overly complex study protocols that discourage participation. 3️⃣ Don't neglect the power of patient advocacy groups. These groups can be invaluable allies. 💡 For more tips on patient recruitment and to dive deeper into clinical research online courses, check out our academy at Viares! Learn more at viares.com. 📚 Viares is your go-to online course platform for clinical research, providing a wealth of free knowledge to our followers. 👉 Follow us for more insights and stay ahead in your clinical research journey! #ClinicalResearch #ClinicalTrials #PatientRecruitment #OnlineCourses #ClinicalResearchEducation #ViaresAcademy #FreeKnowledge #FollowForMore

Clinical research is notoriously challenging, with a myriad of a factors like study start-up, protocol complexity, principal investigator (PI) involvement, community engagement, patient recruitment and retention, or any of a wealth of other factors. Few, if any, sure-fire combinations of ingredients have proven to work for every audience in every setting. Two #ACRP2024 panels included seasoned experts who shared valuable insights on promoting efficiency and inclusivity in clinical trials, offering their "secret sauce" recipe for success. Read more in a recent blog > https://bit.ly/3JSR23R #GoForIt #GoForEducation #Clinical Research #ClinicalTrials #CommunityEngagement #PatientRecruitment

🌍 Promoting Diversity and Inclusion in Clinical Research 🌍 At Clinical Research Learning Network, we believe that EVERYONE should have access to clear, accessible information about clinical trials—no matter their language or background. 🧑⚕️🧑🏾🔬 Our free educational resources empower patients to: ✅ Understand the basics of clinical trials ✅ Ask the right questions to their providers ✅ See how their participation contributes to advancements in medicine To ensure inclusivity, our resources are available in Spanish, Hindi, and Arabic, making it easier for diverse communities to engage in clinical research and play a vital role in shaping the future of healthcare. 🌟 We are committed to breaking down barriers and fostering a more inclusive clinical trial environment where every voice is heard and valued. 🫱🏽🫲🏿 💻 Learn more and access these resources today: https://buff.ly/3Xw5tTd #ClinicalResearch #HealthEquity #DiversityInResearch #InclusionMatters #PatientEmpowerment #HealthcareForAll #ClinicalTrials #ResearchMatters #GlobalHealth #MedicalResearch #MultilingualEducation

A must-watch presentation about transforming ME/CFS care by #MEAction’s Scientific Director, Jaime Seltzer, is now available: https://lnkd.in/e-7Amtg8 Seltzer presented at the Institute for Neuro-Immune Medicine conference in May. She begins by walking us through some highlights of #MEAction’s scientific and advocacy work and then shares some behind-the-scenes information about the recent Mayo Clinic Rochester and SIDM collaborations. It really illustrates the importance of building collaborative relationships. Jaime discusses how through #TeachMETreatME, we are moving towards a model of collaborative clinical education advocacy. This presentation helps show how critical it is that #MEAction has had your support to enable us to build these relationships and collaboration. Some activism and advocacy is done with loud protests or powerful art demonstrations and some is done with intense research and relationship building. Both are desperately needed. We are honored to have Jaime Seltzer lead the medical education charge here at #MEAction. #pwME #MECFS #LongCovid #MedEd #MyalgicEncephalomyelitis ID: Laptop open to show the presentation opening slide of Transforming ME/CFS Care. Wording above: "Watch now. Presentation by Jaime Seltzer" Wording below: “Transforming ME/CFS Care: A Collaborative Approach" by Jaime Seltzer presented at the INIM conference.

🔬 TrialSmart: Education Series on Clinical Trials 🧠 TrialSmart is a series of nine modules for people living with MS and their communities to raise awareness of and provide education about clinical trials in Australia. Get TrialSmart 👉 https://lnkd.in/gGeDbGRM #MS #multiplesclerosis #MSresearch #clinicaltrials

🤗 Excited to share my transformative experience with the Patient, Citizen, and Politics of Evidence module in the MSc in Translational Health Science program at the University of Oxford, Department for Continuing Education and Nuffield Department of Primary Care Health Sciences - University of Oxford Initially, I underestimated the significance of this module in my practice. Confession time🙈: I didn't fully grasp its content. However, fast forward to now, and it's the most insightful module I've encountered. Why? Because it opened my eyes to the indispensable value of incorporating patient lived experiences in clinical care, interventions, and research. Through engaging with guest speakers, many of whom are patients themselves, I gained profound insights into their lived experiences and how they've contributed to research by sharing their stories and actively participating in Patient Public Involvement and Engagement groups. These personal narratives brought to light the gaps in my previous attempts to intervene or provide care for my own patients. Their voices underscored the critical importance of centering healthcare around the individuals it serves...the true essence of "patient-centeredness". 😆 Additionally, what makes this module truly exceptional is the nurturing environment fostered by the tutors, Teresa Finlay and Joseph Wherton. They create a friendly, safe space that encourages openness and engagement from all students. And let me tell you, the diversity among my peers is astounding. From engineers to CEOs, researchers to monitoring and evaluation experts, and myself, a clinician – our varied backgrounds enriched our discussions and deepened our understanding of patient advocacy and public involvement. If you're passionate about advocating for patients and the public (which we all must be), I wholeheartedly encourage you to consider taking this module. It's not just about expanding your knowledge; it's about evolving your perspective and becoming a more compassionate, informed healthcare professional. (and any other profession 😄). I am excited to champion patient-centered care and drive positive change in my community and healthcare systems worldwide. 🌍 #TranslationalHealthScience #PatientAdvocacy #UniversityOfOxford #PCPE2024

Discover how to elevate your research with meaningful #patientengagement! In this virtual workshop, UHN’s Pride in Patient Engagement (PiPER) team will highlight essential tools and insights from the PiPER toolkit to help researchers effectively plan, implement, and evaluate patient engagement in research (PER). Effective PER can positively influence the quality of research and the ability to create successful grant applications. During the workshop, participants will learn about: ◼ Concepts related to PER ◼ The roles people with lived experience can play in research ◼ Training resources specific to the roles that individuals can play within research projects, programs, departments, or research institutes at UHN ◼ Tools to plan, implement, and evaluate the success of PER ◼ Overview of PER related to grant applications The workshop is designed for UHN scientists, research staff, trainees, community organizations, as well as current and future patients and care partners. The workshop is free and open to everyone. Workshop recording will be sent to all registrants. Register now here: https://lnkd.in/eeMsyEJE