Patvocates

🔍 A new resource for finding clinical trials in the EU! The European Medicines Agency (𝗘𝗠𝗔) recently launched an interactive clinical trial map in the European Union (EU), based on real-time data from the 𝗖𝗹𝗶𝗻𝗶𝗰𝗮𝗹 𝗧𝗿𝗶𝗮𝗹𝘀 𝗜𝗻𝗳𝗼𝗿𝗺𝗮𝘁𝗶𝗼𝗻 𝗦𝘆𝘀𝘁𝗲𝗺 (𝗖𝗧𝗜𝗦): https://lnkd.in/dnbX7EjE This new map helps 𝗽𝗮𝘁𝗶𝗲𝗻𝘁𝘀, 𝗰𝗮𝗿𝗲𝗴𝗶𝘃𝗲𝗿𝘀 𝗮𝗻𝗱 𝗵𝗲𝗮𝗹𝘁𝗵𝗰𝗮𝗿𝗲 𝗽𝗿𝗼𝗳𝗲𝘀𝘀𝗶𝗼𝗻𝗮𝗹𝘀 easily search for ongoing trials by medical condition and location—presented in clear, accessible language. 💡 It provides details on: 📌 𝟴,𝟳𝟯𝟴 𝗰𝗹𝗶𝗻𝗶𝗰𝗮𝗹 𝘁𝗿𝗶𝗮𝗹𝘀 across the EU 📌 𝟴,𝟰𝟵𝟱 𝘁𝗿𝗶𝗮𝗹 𝘀𝗶𝘁𝗲𝘀 📌 Trials that are recruiting, about to start, or currently ongoing Marking a significant step forward for #Transparency in #ClinicalTrials, the map enhances access to publicly available information in #CTIS, making it easier to search and navigate. Each listing includes key details such as 𝘁𝗿𝗶𝗮𝗹 𝗽𝗵𝗮𝘀𝗲, 𝗲𝗹𝗶𝗴𝗶𝗯𝗶𝗹𝗶𝘁𝘆 𝗰𝗿𝗶𝘁𝗲𝗿𝗶𝗮, 𝗹𝗼𝗰𝗮𝘁𝗶𝗼𝗻𝘀, 𝗮𝗻𝗱 𝗶𝗻𝘃𝗲𝘀𝘁𝗶𝗴𝗮𝘁𝗼𝗿 𝗰𝗼𝗻𝘁𝗮𝗰𝘁𝘀, improving how people find what they require and use this resource. The map is currently available in English, with more EU languages to follow. #PatientAccess #ClinicalResearch #EMA #ResearchTransparency 

✨ 𝗪𝗼𝗺𝗲𝗻 𝗮𝗿𝗲 𝘀𝗵𝗮𝗽𝗶𝗻𝗴 𝘁𝗵𝗲 𝗳𝘂𝘁𝘂𝗿𝗲 𝗼𝗳 #𝗣𝗮𝘁𝗶𝗲𝗻𝘁𝗘𝗻𝗴𝗮𝗴𝗲𝗺𝗲𝗻𝘁 𝗮𝗻𝗱 𝗰𝗵𝗮𝗺𝗽𝗶𝗼𝗻𝗶𝗻𝗴 #𝗛𝗲𝗮𝗹𝘁𝗵𝗘𝗾𝘂𝗶𝘁𝘆 💜 They lead, collaborate and drive change. Across patient communities, we see women driving advocacy, advancing engagement and ensuring that healthcare become more inclusive, responsive and accessible for all. But to truly achieve equity, healthcare 𝗺𝘂𝘀𝘁 𝗮𝗹𝘀𝗼 𝘄𝗼𝗿𝗸 𝗳𝗼𝗿 𝘄𝗼𝗺𝗲𝗻, 𝘁𝗼𝗼. Women have long been underrepresented in clinical research, yet they experience different treatment responses and higher rates of adverse effects. 𝗪𝗲 𝗻𝗲𝗲𝗱 𝗺𝗼𝗿𝗲 𝗴𝗲𝗻𝗱𝗲𝗿-𝗶𝗻𝗰𝗹𝘂𝘀𝗶𝘃𝗲 #ClinicalTrials that assess safety and efficacy profiles specifically for women—because when medicine is designed for everyone, 𝗵𝗲𝗮𝗹𝘁𝗵 𝗼𝘂𝘁𝗰𝗼𝗺𝗲𝘀 𝗶𝗺𝗽𝗿𝗼𝘃𝗲 𝗳𝗼𝗿 𝗮𝗹𝗹. At Patvocates, we work with inspiring women every day—patient leaders, advocates, researchers and changemakers shaping a more equitable future. Their efforts do more than improve health outcomes; they create lasting impact for entire communities. On #InternationalWomensDay, we celebrate their efforts, their voices and their vision. And we recognise that true equity requires ongoing commitment from all of us. An inclusive world is a healthier world—and together, we can make it a reality. #IWD2025 #AccelerateAction #Inclusion #GenderEquity #DEI

We were pleased to support a discussion with Johnson & Johnson’s global development leaders and #PatientAdvocacy team on their patient advocacy strategic framework. Moderated by Gonzalo Linares, with contributions from Susan Gaffney (National Health Council), J&J’s Mingyi Sun, and our CEO Jan Geissler, the panel on “𝘗𝘢𝘵𝘪𝘦𝘯𝘵 𝘈𝘥𝘷𝘰𝘤𝘢𝘤𝘺: 𝘵𝘦𝘢𝘮𝘪𝘯𝘨 𝘧𝘰𝘳 𝘪𝘮𝘱𝘢𝘤𝘵” explored J&J’s #PatientEngagement and advocacy approach - co-created by a cross-functional team with patient leaders’ input and supported by the Patvocates team. It was great to see partnerships with patients and advocacy organisations recognised as a key topic. Opportunities like these allow us to meet different leadership teams individually to discuss the engagement with patients.

Rare diseases affect over 𝟯𝟬𝟬 𝗺𝗶𝗹𝗹𝗶𝗼𝗻 𝗽𝗲𝗼𝗽𝗹𝗲 𝘄𝗼𝗿𝗹𝗱𝘄𝗶𝗱𝗲, yet many continue to face barriers to diagnosis, treatment and care. Today, on #RareDiseaseDay 📅, we stand in solidarity with those living with a rare disease, along with their families, carers, healthcare professionals, researchers and advocates working to improve their lives. Despite challenges for rare disease communities, progress is being made through collaboration and strengthening advocacy. #PatientOrganisations, #PatientAdvocates and multi-stakeholder initiatives can make a difference by addressing gaps in care, pushing for better policies and ensuring that 𝗽𝗮𝘁𝗶𝗲𝗻𝘁𝘀’ 𝘃𝗼𝗶𝗰𝗲𝘀 𝗮𝗿𝗲 𝘁𝗿𝘂𝗹𝘆 𝘃𝗮𝗹𝘂𝗲𝗱. 𝗕𝘂𝗶𝗹𝗱𝗶𝗻𝗴 𝘀𝘁𝗿𝗼𝗻𝗴𝗲𝗿 #𝗣𝗮𝘁𝗶𝗲𝗻𝘁𝗘𝗻𝗴𝗮𝗴𝗲𝗺𝗲𝗻𝘁 𝗮𝗻𝗱 𝗮𝗱𝘃𝗼𝗰𝗮𝗰𝘆 𝗶𝘀 𝗮𝘁 𝘁𝗵𝗲 𝗵𝗲𝗮𝗿𝘁 𝗼𝗳 𝘄𝗵𝗮𝘁 𝘄𝗲 𝗱𝗼. Through working with organisations and industry leaders, we help create more inclusive and impactful collaborations. Whether through capacity building, policy or research initiatives, we strive to ensure that patient perspectives and lived experiences are central to informing rare disease care and innovation. 👉 True progress in rare diseases calls for our joint effort to elevate patient involvement and turn insights into action. Today, we recognise and appreciate everyone working towards this goal—not just on 𝗥𝗮𝗿𝗲 𝗗𝗶𝘀𝗲𝗮𝘀𝗲 𝗗𝗮𝘆, but every day. #RareDiseaseDay2025

🎗 Today, we mark #InternationalChildhoodCancerDay 🌍 by recognising the resilience of children and young people affected by cancer, as well as their families, caregivers and healthcare professionals supporting them. We applaud to the hard work #PatientOrganisations are doing to support people affected by cancer at a young age. #PatientEngagement is vital for every community, including the youngest among us. While many serious conditions including cancer are often linked to older adults, young patients—some diagnosed in childhood and others in adolescence or young adulthood—face distinct challenges in treatment, research, education, survivorship and mental health. Our team is committed to strengthening patient advocacy by empowering #YoungPatient advocates and organisations to drive meaningful change. Through training on #PatientAdvocacy and the use of evidence, we equip them with the knowledge and tools to shape policies, research and care that reflect their lived experiences. On this day, we reaffirm the importance that communities of young people impacted by cancer—whether in childhood, adolescence, or young adulthood—are heard, supported and included in shaping better care. #ChildhoodCancer #YoungPatients

At The Cancer Drug Development Forum (CDDF) Annual Conference 2025 held in Noordwijk aan Zee, the Netherlands (3-5 February), our Patient Engagement Manager, Khullat Munir, joined a distinguished panel at the CDDF & AAADV Joint Session on Diversity in Global Drug Development to discuss the importance of early and meaningful collaboration with diverse #PatientCommunities in #ClinicalTrials. Khullat highlighted that ensuring diversity in trials goes far beyond ticking a box. #Representation 𝗺𝘂𝘀𝘁 𝗯𝗲 𝗯𝘂𝗶𝗹𝘁 𝗶𝗻𝘁𝗼 𝘁𝗵𝗲 𝘃𝗲𝗿𝘆 𝗳𝗼𝘂𝗻𝗱𝗮𝘁𝗶𝗼𝗻 of clinical trial design, operations, and even post-market authorisation. This means engaging with underrepresented populations from the start, listening to their perspectives, planning together and making participation more accessible. At Patvocates, we work with #PatientOrganisations and industry partners to embed 𝗱𝗶𝘃𝗲𝗿𝘀𝗶𝘁𝘆, 𝗲𝗾𝘂𝗶𝘁𝘆 𝗮𝗻𝗱 𝗶𝗻𝗰𝗹𝘂𝘀𝗶𝗼𝗻 (#DEI) principles into drug development. Our services in this space include: ✅ 𝗠𝗮𝗽𝗽𝗶𝗻𝗴 𝘂𝗻𝗱𝗲𝗿𝗿𝗲𝗽𝗿𝗲𝘀𝗲𝗻𝘁𝗲𝗱 𝗽𝗼𝗽𝘂𝗹𝗮𝘁𝗶𝗼𝗻𝘀 to identify barriers and solutions for clinical trial participation ✅ 𝗖𝗼𝗻𝘀𝘂𝗹𝘁𝗶𝗻𝗴 𝗼𝗻 𝗶𝗻𝗰𝗹𝘂𝘀𝗶𝗼𝗻 𝘀𝘁𝗿𝗮𝘁𝗲𝗴𝗶𝗲𝘀 across the clinical trial timeline ✅ 𝗧𝗿𝗮𝗶𝗻𝗶𝗻𝗴 𝗼𝗻 𝗵𝗲𝗮𝗹𝘁𝗵 𝗱𝗲𝘁𝗲𝗿𝗺𝗶𝗻𝗮𝗻𝘁𝘀, 𝘁𝗿𝘂𝘀𝘁-𝗯𝘂𝗶𝗹𝗱𝗶𝗻𝗴 𝗶𝗻 𝗿𝗲𝘀𝗲𝗮𝗿𝗰𝗵, 𝗮𝗻𝗱 𝗽𝗮𝘁𝗶𝗲𝗻𝘁 𝗲𝗻𝗴𝗮𝗴𝗲𝗺𝗲𝗻𝘁 𝗯𝗲𝘀𝘁 𝗽𝗿𝗮𝗰𝘁𝗶𝗰𝗲𝘀 As we push to advance #HealthEquity, our focus remains clear: 𝗽𝗮𝘁𝗶𝗲𝗻𝘁𝘀 𝗳𝗿𝗼𝗺 𝗮𝗹𝗹 𝗯𝗮𝗰𝗸𝗴𝗿𝗼𝘂𝗻𝗱𝘀 𝗱𝗲𝘀𝗲𝗿𝘃𝗲 𝘁𝗼 𝗵𝗮𝘃𝗲 𝗮 𝘀𝗲𝗮𝘁 𝗮𝘁 𝘁𝗵𝗲 𝘁𝗮𝗯𝗹𝗲—not just as participants, but as 𝗽𝗮𝗿𝘁𝗻𝗲𝗿𝘀 𝗶𝗻 𝗿𝗲𝘀𝗲𝗮𝗿𝗰𝗵. What steps do you think are essential to ensure truly #Inclusive clinical trials? #DiversityInResearch #PatientEngagement

With regulatory pushback on #Diversity, #Equity and #Inclusion, how do we ensure #DEI remains a priority in #ClinicalTrials? Khullat Munir, Patient Engagement Manager at Patvocates, explores why this is more than just a social justice issue in this article 📖👇 https://lnkd.in/dVjT75qC #HealthEquity

What if #Compliance were seen as an enabler? Patvocates' Executive Director, Ananda Plate, explores how a shift in perspective can unlock meaningful #PatientEngagement. https://lnkd.in/d3dfTGYi

➡️ 𝗦𝗵𝗲𝗱𝗱𝗶𝗻𝗴 𝗟𝗶𝗴𝗵𝘁 𝗼𝗻 𝘁𝗵𝗲 𝗜𝗻𝘃𝗶𝘀𝗶𝗯𝗹𝗲 𝗕𝘂𝗿𝗱𝗲𝗻 𝗼𝗳 𝗖𝗵𝗿𝗼𝗻𝗶𝗰 𝗚𝗩𝗛𝗗 Imagine surviving cancer, only to face a lifelong condition that no one can see—one that affects your body daily but remains invisible to the world. While others celebrate survival, the reality for many post-transplant patients is a continuous struggle with chronic graft-versus-host disease (cGVHD)—a debilitating condition that can follow a life-saving stem cell transplant. 𝗔 𝗗𝗼𝘂𝗯𝗹𝗲-𝗘𝗱𝗴𝗲𝗱 𝗦𝘄𝗼𝗿𝗱 The immune response from donor cells is crucial in eliminating remaining cancerous cells and preventing relapse. However, in some cases, those same donor cells attack healthy tissues, leading to inflammation, organ damage, skin and mucosal issues, severe pain and mobility challenges. For some, #cGVHD becomes a #Chronic, life-altering condition that drastically impacts #QualityOfLife, yet remains widely misunderstood and underdiagnosed. 𝗙𝗮𝗹𝗹𝗶𝗻𝗴 𝗧𝗵𝗿𝗼𝘂𝗴𝗵 𝘁𝗵𝗲 𝗖𝗿𝗮𝗰𝗸𝘀 Despite its impact, cGVHD patients often struggle to find coordinated medical care. The disease's complexity means that no single specialist takes full responsibility for managing it. Patients are left navigating a fragmented healthcare system, going between: 🔹 Hematologists (who focus on the transplant but not long-term effects) 🔹 Dermatologists (who treat skin symptoms but not systemic issues) 🔹 Neurologists (who may address nerve damage but not the immune aspect) 🔹 Cardiologists (who monitor the heart but not immune-related inflammation) 🔹 Gynecologists (who treat mucosal symptoms but not all the potential gynecological effects of GVHD) 🔹 Psychologists (who support mental health but lack cross-discipline coordination) 🔹 General practitioners (who often don’t have the expertise to oversee such a complex disease) Many miss out on appropriate treatments, clinical trials and expert care because no one connects the dots across disciplines. This must change. 𝗧𝗮𝗸𝗶𝗻𝗴 𝗔𝗰𝘁𝗶𝗼𝗻 𝗳𝗼𝗿 𝗰𝗚𝗩𝗛𝗗 𝗣𝗮𝘁𝗶𝗲𝗻𝘁𝘀 Last week, the Patvocates team Jan Geissler, Blanca Poyo Ormaza, Ana Amariutei, and Rachel Giles moderated an advisory board of a company doing research on cGvHD with leading #PatientAdvocates. Together, we: ✅ Mapped the patient journey to uncover critical gaps in diagnosis, treatment, and quality of life ✅ Identified action points to improve access to specialised, coordinated care ✅ Discussed the design of a new study to tackle cGVHD, ensuring it is scientifically rigorous while being practical and minimally burdensome for patients We were impressed by the patient advocates’ energy, insights and commitment—despite personal challenges, they are relentless in driving change. Equally, we appreciate the industry partner’s long-term commitment to ensuring their actions align with real patient needs. Thanks to the team for their dedication in pushing this forward. Let’s ensure cGVHD patients get the care and attention they deserve.

🌍 #Cancer affects millions of lives, but behind every statistic or figure are individuals, families and communities navigating complex challenges. Today, on #WorldCancerDay, we want to acknowledge how #PatientEngagement helps shape better outcomes for those affected by cancer🎗️ At Patvocates, we continue to work with different #PatientCommunities to ensure that the patient voice is not just heard, but actively contributes to decisions that shape healthcare policies, research and care. We believe that meaningful patient engagement leads to stronger, more informed decision-making—one that truly reflects the needs, preferences and realities of those impacted. By strengthening these communities, equipping advocates with the right knowledge and tools, and fostering collaboration across the healthcare ecosystem, we are working towards a future where #Empowered patients drive change. Today is a reminder that progress is possible when we listen, learn and act together.