WorldThrombosisDay’s Post

🌍💙 Be a Key Partner in the 2025 World Thrombosis Day Campaign! 💙🌍 In 2025, we’re taking World Thrombosis Day to new heights — and we want YOU to be part of it. By supporting this global movement, you’re helping to raise awareness, fund crucial research, and drive real change in the fight against thrombosis. 👉 Why support the 2025 WTD campaign? ✨ Gain global exposure through impactful campaigns, events, and media. ✨ Showcase your brand as a leader in healthcare and social responsibility. ✨ Connect with influential healthcare professionals and patient advocacy groups. ✨ Make a measurable impact in reducing preventable deaths worldwide. Together, we can make 2025 a turning point in the fight against thrombosis. 🌟 #WTDay25 #PartnerForChange #SaveLives #ThrombosisAwareness #GlobalHealth #ISTH #HealthcareInnovation

New Real-life Stories on OdySMA! 📣🙌 While stabilising treatment for SMA is available, European-wide access is not. 🤓 Meet Julia's parents to understand how access to treatment and care, can impact the lives of people living with SMA! 🎤💬 https://lnkd.in/d2NaSUB5 OdySMA is an SMA Europe initiative that systematically tracks and compares data about access to treatment and care in Europe to propose actionable steps to overcome access challenges.  Real-life stories offer real life portraits, created through participatory and collaborative storytelling with their protagonists. The stories also shed light on new priorities in the community, such as the importance of being able to choose which treatment to undertake, or the way that the diagnosis is communicated to the family. We also showcase successes and challenges in patient advocacy journeys in different European countries.  Do you want to share your story? If so, please get in touch with Laura Gumbert, Healthcare System and Access Manager at SMA Europe (laura.gumbert@sma-europe.eu). ✉️ #SpinalMuscularAtrophy #RareDisease #AccessToTreatment

How do we use our voices to reach a wider community for Antimicrobial Resistance (AMR)? Next week on 29th August 2024, in partnership between The AMR Narrative and The European Patients' Forum join us for a webinar about the impact of AMR on several patient groups. Participate in the discussion about: 💡 How can we define patient advocacy for AMR? 💡 What could work well in terms of reaching a wider community for AMR? 💡 How to communicate such a complex topic like AMR in an engaging way? Register here 👉 https://lnkd.in/ePMekAxD #theAMRnarrative #AMR #AntimicrobialResistance #PatientAdvocacy #antibiotics #patients

📣 Join FSR's Health Equity Consultant Khaleelah Cohen for an Engaging Webinar! The Autoimmune Registry's monthly webinar series brings together patient advocacy leaders to spotlight impactful initiatives. This month, our very own Khaleelah Cohen, Health Equity Programs Consultant at the Foundation for Sarcoidosis Research (FSR), will share insights into the Ignore No More Initiative—a groundbreaking campaign focused on improving health outcomes and clinical trial access for Black patients with sarcoidosis. ✨ Khaleelah will discuss: How Ignore No More was developed and evolved into a larger movement. Practical strategies for creating impactful health equity programs. Lessons learned to inspire and guide similar initiatives. 📅 When: Thursday, December 12th, 12-1 PM ET 📍 Where: Via Zoom Don’t miss this chance to learn from Khaleelah's expertise in health equity, advocacy, and campaign development. 👉 Register here: https://loom.ly/w8uM3fA Let’s work together to advance equity and improve outcomes for underserved communities! #HealthEquity #AutoimmuneDisease #Sarcoidosis

Today, we stand in solidarity with the global community to mark Global Amyotrophic Lateral Sclerosis (ALS) Awareness Day and commemorate the anniversary of the Ice Bucket Challenge. This powerful movement shines a spotlight on ALS, raising awareness and fostering hope for all those affected. Zambon is continuing its commitment to enhancing its Central Nervous System (CNS) portfolio. The launch of a new formulation in several European countries is specifically designed to support people living with ALS. By supporting the ALS community, Zambon underscores its dedication to delivering innovative treatments for rare diseases, reaffirming its mission to improve lives and foster hope. Let’s continue to support research, advocacy, and people living with ALS. 💙🧊 #ALSawareness #IceBucketChallenge #TogetherWeCanMakeADifference #ZambonCares #ALSResearch #RareDiseases #UnderstandingALS #ALSwithoutBorders #ALSMNDWithoutBorders #AmyotrophicLateralSclerosis #ALSIceBucketChallenge #MNDIceBucketChallenge #EveryAugustUntilACure

What would you do if you had a rare disease that your doctor (and your family) didn’t know much about? For people living with PBC (Primary Biliary Cholangitis), this is their reality. If you’re attending Pharma Market Research Conference PMRC Bay Area, mark your calendar for this not-to-be-missed session. Join Ben Kozub and Mark McLaughlin of CymaBay, as they share how emotional insights revealed deeper context to bolster their campaign strategy and how story-based empathy led to a deeper understanding and engagement with the PBC (primary biliary cholangitis) advocacy community. From Livers to Living: How CymaBay Flipped the Script from Focusing on a Rare Disease to Hoistic Well-BeingThursday, 6/13 | 9:00 AM PST | TRACK A Connect with the Brandtrust team and pick up our gift of insight (a new book!) at our booth. Not attending but interested in these topics? Connect with us today! #EmotionalInsights #MarketResearch #PMRC

👁️ It's Thyroid Eye Disease Awareness Week! 👁️ At leapcure, we are reflecting on the incredible progress made in Thyroid Eye Disease (TED) advocacy and research spaces. Over the past few years, we've been fortunate to witness, and be a part of, the growth of awareness, collaboration, and breakthroughs that have positively impacted so many lives. From fostering partnerships with advocacy organizations to driving patient-centric clinical trials, we've seen firsthand how the power of community and innovation can transform care for individuals living with TED. This week, we celebrate the strides made in education, support, and research and remain committed to advancing solutions that bring hope and progress to patients worldwide. 💙 Let’s keep the momentum going!#TEDAwarenessWeek #ThyroidEyeDisease #PatientAdvocacy #Leapcure #ClinicalResearch #AdvancingCare

We've arrived at the Patient Centricity and Engagement Conference, ready to dive into transformative discussions with industry leaders from Pharma, advocacy groups, and patients themselves. Together, we're turning words into actions, driving patient engagement through impactful, collaborative partnerships. We’re looking forward to discovering fresh new insights on pushing patient centricity forward and the panel discussions on stakeholder collaboration, patient perspectives, end-to-end engagement, and overcoming barriers. Stay tuned as we share highlights and key takeaways! #PatientCentricity #PatientEngagement #HealthcareInnovation #AdvocacyPartnerships

A huge thank you to European Patients' Forum for organizing such an impactful training, where young participants engaged in critical discussions on Antimicrobial Resistance (AMR), sharing their insights and experiences. It was an honor to hear from incredible speakers like Gavin S. who emphasized the importance of involving patients in every stage of developing digital tools to ensure they meet real patient needs. Also, Vanessa Carter, an AMR Patient Survivor, shared her powerful story of resilience and activism, inspiring us to act now and create change. The interactive sessions, including an insightful agora with experts, deepened our understanding of AMR and equipped us with valuable knowledge. Antimicrobial Resistance is a silent pandemic that needs urgent attention. It is imperative that all countries develop and implement national action plans now because this is an emergency that affects us all. 🌍💪 #AMR #STYPA2024 #EuropeanPatientsForum #PatientAdvocacy #Healthcare #SilentPandemic #NationalActionPlans

Don't miss our next webinar "Patient Advocacy on AMR in the EU: where do we begin?", co-organised by the European Patients' Forum and The AMR Narrative. 🗓 20 June 2024 ⏰ 3 - 4pm CEST This will be the first of a series of 3️⃣ webinars on the impact of AMR on various patient groups in the EU and will serve as a platform for dialogue driven by patient organisations to support advocacy efforts. Register today ➡ https://bit.ly/4bPAAxn #AMR #webinar #awareness #patients #Vote4Patients