The AMR Narrative’s Post

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

Educate | Advocate | Act now The theme for the World AMR Awareness Week #WAAW2024 has been recently announced and calls on the global community to educate stakeholders on #AMR, advocate for bold commitments and take concrete actions in response to AMR. Stronger political leadership, advocacy and accountability are needed at all levels and the time to act is now. RAISE AWARENESS, STOP ANTIMICROBIAL RESISTANCE (AMR)

Antimicrobial Resistance (AMR) is often described as a “silent” pandemic, even though the impact it has is far from silent. AMR is real and is a serious threat to medicine, surgery, and life as we know it today. Improving education, raising awareness, and implementing national action plans regarding AMR should be a priority, both on a personal, national and international level. A belated thank you to European Patients' Forum for organising such an impactful training, engaging young patients in critical discussions regarding Antimicrobial Resistance (AMR). From insightful discussions with experts in the field, to inspiring strategy training, STYPA 2024 has deepened our understanding of AMR and equipped us with the necessary skills to advocate for this cause. The EPF Youth Group #AMR #STYPA2024 #EuropeanPatientsForum #PatientAdvocacy #Healthcare #SilentPandemic #NationalActionPlans

Disability Pride Month has just started, and I’m thrilled to celebrate by sharing my recent podcast episode with Dr Natasha Punia on Invisible Insights by InflamMed! In this episode, you’ll get to know what led me to patient advocacy, how I manage my well-being while being involved in this field, and other important topics. Thank you, Natasha, for inviting me and for our engaging discussion on topics that are crucial not just to me but to our entire community. Tune in and listen on the link below! #DisabilityAdvocacy #PatientAdvocacy

🎙️ New Episode Alert on Invisible Insights by InflamMed! 🌟 Join us as Adéla Odrihocká, a passionate advocate for rare diseases, shares her profound journey and the critical challenges within the healthcare system. Adéla discusses the lengthy diagnosis journeys, the impact of gender bias, and the necessity of holistic care. She highlights how digital tools are revolutionising advocacy and improving patient care, underscoring the importance of patient involvement in policy-making and decision processes. 🔗 Dive deeper into the discussion on how Adéla balances her advocacy with personal health and why initiatives like a national coordinator in the Czech Republic could be a game-changer in healthcare. Don't miss her insights on creating more inclusive and supportive environments for those with rare diseases. 👉 Watch now: https://lnkd.in/eF56hVdi #RareDiseases #ChronicIlness #ChronicInflammation #HealthcareAdvocacy #InvisibleInsights #InflamMed #PatientAdvocacy #HolisticCare #DigitalHealth

For our Australian CASK Families and Rare Community, Rare Voices Australia and The Kids Research Institute (formerly Telethon Kids Institute) are interested in finding out what you think are the 𝐓𝐨𝐩 𝟏𝟎 𝐌𝐨𝐬𝐭 𝐈𝐦𝐩𝐨𝐫𝐭𝐚𝐧𝐭 𝐔𝐧𝐚𝐧𝐬𝐰𝐞𝐫𝐞𝐝 𝐑𝐞𝐬𝐞𝐚𝐫𝐜𝐡 𝐐𝐮𝐞𝐬𝐭𝐢𝐨𝐧𝐬 𝐟𝐨𝐫 𝐭𝐡𝐞 𝐅𝐮𝐭𝐮𝐫𝐞 𝐨𝐟 𝐑𝐚𝐫𝐞 𝐃𝐢𝐬𝐞𝐚𝐬𝐞 𝐑𝐞𝐬𝐞𝐚𝐫𝐜𝐡 𝐢𝐧 𝐀𝐮𝐬𝐭𝐫𝐚𝐥𝐢𝐚. These findings will inform a public report that will be used to guide advocacy for rare disease research in Australia.This 5-10 minute anonymous online survey asks you about your most important research questionsor concerns about rare disease. Learn more and complete the survey: https://lnkd.in/g-6mwjgk Rare Voices Australia Falak Helwani #RareDiseaseResearch #RareDisease

Yesterday was World Myositis Day. Did you know this observance has roots in the US dating back to 2006? TMA proudly partners with worldwide patient advocacy organizations to drive myositis awareness. TMA initiated "National Myositis Awareness Day" to be observed each year on September 21 as a way to drive awareness of these rare diseases among the public. A 2006 proclamation by the US House of Representatives endorsing National Myositis Awareness Day capped a years-long effort by TMA. While TMA expanded awareness efforts to the month of May as Myositis Awareness Month, September 21 continued to be observed. Learn more about World Myositis Day on TMA's website. https://lnkd.in/e9jZmJ2B #Myositis #MyositisWarrior #MyositisAwareness #TheMyositisAssociation #MyositisSupport #RareDisease #MYOMovement #MyositisLife #MyTMA #PatientAdvocacy #TheMyositisAgenda #MyositisAwareness #MyositisAwareness2024 #AwarenessForMyositis #WorldMyositisDay

The 8️⃣th edition of the Skills Training Course for Young Patients (#STYPA2024) meeting has come to an end! 🎉     During the training on 4th-7th July, young participants delved into critical discussions on Antimicrobial Resistance (AMR), sharing their insights and experiences.      Some key takeaways included:    💡 The impact of AMR on patient communities.  💡 Strategies to raise awareness about AMR.  💡 Planning effective advocacy campaigns.    In the coming months, participants will take part in workshops and webinars to follow up on their projects.    Read more about this initiative 👉 https://bit.ly/3VRKKXN    #AntimicrobialResistance #AMR #PatientAdvocacy #YouthEmpowerment

⭐ Please join today! After cancer itself, antimicrobial resistance (AMR) is the second leading cause of death among people with cancer. Beyond the contibution of AMR to the mortality, it can complicate the medical condition, prolong hospital stays and cause sequelae; and people with cancer are vulnerable for this. Need to take more action! 📌 #cancer #AntiMicrobialResistance #kanser #AntiMikrobiyalDirenç

There is an urgent world need for people with DI/Vasopressin Deficiency to understand and better manage this condition. Advocacy groups World Alliance of Pituitary Organizations (WAPO), the Got DI/AVP patient Facebook community, and the Histiocytosis Association have put together a survey to learn more about patient needs in AVP/DI. So, if you have experience with this challenging condition, please take the time to complete the survey. Your input is invaluable. The survey was supervised by Dr. Cihan Atila from University of Basel, Switzerland, who has published extensively on the subject. Survey available via link or by scanning the Qr code in the image 🔗 https://lnkd.in/eQ2PMBHp