ASCERTAIN’s Post

🎉Have you read MPE´s Year in Review 2024? As we step into 2025, our commitment to advancing patient advocacy and support remains stronger than ever. 📄 Read the full report here: https://lnkd.in/dD4ZFhwQ #MPEYearInReview 

There are many patient registries, how do you know what sets them apart? Discover some ways in which ours stands out and what we do to make it successful! Join the registry: https://lnkd.in/eEEKsiWt Hear more in the webinar held by Critical Path Institute (C-Path), the "The Influential Role of Patient Advocacy Groups in Registry Data Efforts": https://lnkd.in/eweFknAM #leighsyndrome #mitochondrialdisease

How will the #IRA and other key regulatory and policy activities shaping benefit design and cost sharing impact patients? In a recent webinar, #AvalereExperts discussed #patient access and affordability efforts from manufacturers, foundations, and patient advocacy organizations. Watch the full conversation here: https://lnkd.in/eb-aB-x9 Moderated by Ayesha Azam, with speakers Mark Gooding, Lisa Joldersma, Brigit Kyei-Baffour, MBA, and Kylie Stengel.

📢 MPE Year in Review 2024 is here! We are proud to share the accomplishments that marked this year, from representing patient needs in European health policy to delivering resources that empower member organisations. As we look toward 2025, we remain committed to advancing patient treatment, care and advocacy across Europe. 📄 Download the report here: https://lnkd.in/dD4ZFhwQ #YearInReview #Myeloma #ALamyloidosis #PatientAdvocacy

Addressing the digital divide in healthcare is crucial. Digital therapeutics and strong advocacy are key to breaking down barriers and improving patient access to care. It's essential to push for these advancements to ensure equitable health outcomes for all. Link: https://lnkd.in/exySTw-G #DigitalHealth #HealthcareAccess #PatientCare

Older Americans deserve access to the latest screening tools that can detect dozens of cancers earlier when they’re more treatable, but time is running out. Alongside 500+ of the leading health care and advocacy organizations across the U.S., we will continue to urge Congress to pass the Medicare Multi-Cancer Early Detection Screening Coverage Act before it’s too late. Congress, YOU made saving lives a priority. It’s time to finish the job.  Learn more: https://bit.ly/3XD2sz9 #MCED #EarlyDetection #BetterOutcomes

🌟 Why Join NOFSA as a Patient? 🌟 📢 Membership is absolutely FREE! Here's what you'll gain: 📬 Stay Informed: Regular newsletters with the latest updates on osteoporosis. 📖 Resources at Your Fingertips: Access to information leaflets on key topics about the disease. 📞 Support When You Need It: A helpline or electronic guidance for advice and assistance. 🌐 Up-to-Date Website: Monthly updates and the newest information available. 🎉 Exclusive Access: Be the first to know about events and advancements in osteoporosis care. 🩺 Advocacy That Matters: NOFSA actively lobbies with Medical Aids for patient rights, including DXA reimbursements and medication coverage. 👉 Join the movement today and take a step toward better bone health! https://lnkd.in/dYxn7rv6 #NOFSA #OsteoporosisSupport #PatientAdvocacy #BoneHealth

💊 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

In this video, Sonia Sgro, Global Head Patient Advocacy, LSD, discusses the ongoing challenges that many members of the lysosomal storage disorder (LSD) community face in receiving a diagnosis and accessing treatment. During the SSIEM 2024 Annual Symposium, we reaffirmed our commitment to amplifying the voices of underserved people in the healthcare system, including individuals living with LSDs such as Fabry disease and alpha-mannosidosis. #SSIEM2024 #Fabry #AlphaMannosidosis #RareDiseases #ChiesiGlobalRareDiseases

There are many roadblocks when it comes to navigating rare disease diagnoses and treatments. Opening the lines of communication between patients and healthcare providers is crucial for supporting patients throughout their journey from diagnosis to post-treatment follow-up. How can you leverage advocacy groups and communities to provide an integrated experience for patients with rare diseases? Watch the full recording of our Rare Disease Revolution panel discussion to find out more about this and other critical topics: https://lnkd.in/d9m49Kq4 #KJT #RareDiseases #PatientVoice #PatientCentricity #MedicalResearch #PharmaceuticalResearch