The Myositis Association’s Post

If you missed our Critical Path Institute (C-Path) webinar, "Mitochondrial and Inherited Metabolic Diseases Task Force: The Influential Role of Patient Advocacy Groups in Registry Data Efforts," you can catch the full recording here: https://lnkd.in/eweFknAM #MitochondrialDisease hashtag #Leighsyndrome

Super important discussion on patient advocay on #AMR!

As a patient advocate for AMR during the past 11 years, I always find myself asking this question: "How can we empower patients and boost advocacy towards Antimicrobial Resistance (AMR)?" On the 20th of June 2024, between 3pm - 4pm CEST, the European Patients' Forum (EPF) and The AMR Narrative will jointly host a webinar titled, “Patient Advocacy for AMR in the EU: where do we begin?”. Working together, this will be the first of a series of 3 webinars on the impact of AMR in terms of various patient groups in the EU and will serve as a platform for dialogues driven by patient organisations to support advocacy efforts. Join our discussion around: - How are patient communities impacted by AMR? - What interventions or ideas could be used to boost patient advocacy on AMR? - What are the biggest challenges towards improving advocacy and understanding of AMR? The webinar will be held in English and is open to everyone both in the EU and globally. Register for the webinar here: https://lnkd.in/eyW35HWy #theAMRnarrative #AMR #AntimicrobialResistance #PatientAdvocacy

How can we empower patients and boost advocacy towards Antimicrobial Resistance (AMR)? On the 20th of June 2024, between 3pm - 4pm CEST, the European Patients' Forum (EPF) and The AMR Narrative will jointly host a webinar titled, “Patient Advocacy for AMR in the EU: where do we begin?”. This will be the first of a series of 3 webinars on the impact of AMR in terms of various patient groups in the EU and will serve as a platform for dialogues driven by patient organisations to support advocacy efforts. Join our discussion around: - How are patient communities impacted by AMR? - What interventions or ideas could be used to boost patient advocacy on AMR? - What are the biggest challenges towards improving advocacy and understanding of AMR? The webinar will be held in English and is open to everyone both in the EU and globally. Register for the webinar here: https://lnkd.in/eBa6ZvDD #theAMRnarrative #AMR #AntimicrobialResistance #PatientAdvocacy

Interested in the rare disease atypical HUA? Looking for a snapshot of what's important to aHUS patients & caregivers, or global advocacy efforts? https://lnkd.in/e793kNic  If you saw our recent newsletter, you'd know! Invitation's open, so check it out. #aHUS #cmTMA #TMA #complement #SHUa #newsletter

Australia has one of the highest rates of mesothelioma in the world, with 900 people diagnosed each year. The global impact of mesothelioma underscores the need for international collaboration among researchers, clinicians, and patient advocacy groups to share knowledge, accelerate research progress and improve patient outcomes worldwide. Together, we can make a real difference in the lives of those affected by mesothelioma. Click here to find out more: https://lnkd.in/g3qPkYTr #mesotheliomasafety #asbestos #publichealth

Salix is thrilled to collaborate with multiple patient advocacy groups to provide support to patients suffering from opioid-induced constipation (OIC). Together with the U.S. Pain Foundation (https://bit.ly/2vIgzaa), ACPA (https://bit.ly/4bUvsre), and IFFGD (https://bit.ly/4c0gcZX), we're committed to making a positive impact in healthcare and providing resources for patients to help with OIC. #ConstipationAwarenessMonth

💊 Struggling to afford your asthma medications? We've got tips to help! Elizabeth Johnson from the National Association of Medication Access & Patient Advocacy (NAMAPA) shares some tips to help save money on medications. We all know how essential it is to keep asthma under control, but sometimes the cost of medications—whether it’s an inhaler, a pill, or something else—can be overwhelming. 🏥💰 Visit https://lnkd.in/e7HJGB6E for more helpful information about ways to save! Thank you to Amgen for sponsoring this awareness campaign. #AsthmaAwareness #AffordableCare #MedicationHelp #HealthTips #PatientAdvocacy

Why hasn’t your oncologist talked to you about lifestyle or dietary changes? 🥒 🧘♂️ Michelle explains the possible reasons in this short video. Learn more about what is possible in cancer care today and how to access it - join our online advocacy program: www.cancerjustthefacts.com (Free) #CancerJustTheFacts #CancerAdvocacy

This time last week we launched the 2024 PNSZ workforce survey report. The aim was simple: to raise awareness of the immense pressures our pharmacy sector is under and the impact that is having on our health and wellbeing and ability to provide high-quality services to our patients. The key points made in the story were also covered by mainstream media across New Zealand. I was interviewed by several journalists where I emphasised that: 1. The pharmacy profession is under unsustainable pressure and patient care is suffering. 2. Pharmacy staff nationwide are struggling with staff shortages, funding shortfalls, unsustainable workloads and chronic supply chain shortages. Where to from here? The release of the report is only the beginning. We want to keep raising awareness of the pressures highlighted in the report. We want to keep that momentum by asking you to email our new advocacy inbox advocacy@psnz.org.nz and share your stories about the pressure you are under and what you see as the solutions. The responses will be anonymised, compiled and shared with politicians, officials and other stakeholders. To use a health metaphor, we want you to share the symptoms (how things are now), your diagnosis (why is it like that) and your prescription (what needs to change to fix things). Help us to continue telling your stories.