Myeloma Patients Europe (MPE)’s Post

📢 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

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

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

You have questions, and we have answers! Please join IgG4ward! Founder John Stone MD, MPH and IgG4ward! Director of Patient Advocacy Katharine M. Provencher, MSW for an in-depth IgG4-RD Q&A on Friday, May 31, from 9 – 10:30 A.M. EST. Register for the webinar and submit questions here: https://rb.gy/0pxzyp Katharine and Dr. Stone will address topics including the following and more: ◾️ IgG4-RD diagnosis and treatment options ◾️ Insights for educating others about IgG4-RD ◾️ IgG4-RD resources ◾️Tips for IgG4-RD patients and caregivers Please note, we will try our best to answer all of your questions, however, we can’t guarantee we will answer them all during this Fireside Chat. #igg4rd #igg4relateddisease #raredisease #rarediseaseawareness

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

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.

🌟 Today, on #RareDiseaseDay, let's amplify our support for the millions affected by rare diseases worldwide! 🌍 As medical professionals, we have a crucial role to play in turning awareness into action. Here's how you can get involved and make a meaningful impact: 1️⃣ Educate Yourself and Others: Stay informed about rare diseases and share your knowledge with colleagues and patients. Awareness is key to driving change. 2️⃣ Participate in Rare Disease Day: Engage in local events or use social media to spread awareness using hashtags like #RareDiseaseDay and #ShowYourRare. Let's make our voices heard! 3️⃣ Collaborate with Advocacy Groups: Offer your expertise to advocacy organizations by speaking at events, contributing to educational materials, or providing patient referrals. 4️⃣ Advocate for Policy Change: Support legislative efforts that improve research funding and access to care for rare disease patients. Let's push for policies that promote equitable treatment options. 5️⃣ Encourage Research Participation: Help connect patients with clinical trials and research studies to uncover new treatments and insights into rare diseases. Every contribution counts! Together, let's support organizations like the @EveryLifeFoundation and the @RareDiseaseDiversityCoalition, who tirelessly advocate for rare disease patients and drive impactful change. #RareDiseaseAwareness #Healthcare #Advocacy #Research #Innovation 🧬💡

🌟 Introducing Maria Giannakos, PharmD, MBA, BCPS, BCSCP, FNHIA! As we conclude our Innovators of Home Infusion series, Maria shares her passion for advancing home infusion practices and her impactful role as a mentor for pharmacy practitioners. Recognized as a 2024 NHIA Fellow, she highlights the importance of research in demonstrating the value and safety of home infusion services. Maria's advocacy efforts aim to promote equitable access to these essential services, ensuring that patients receive the best care possible. Curious about Maria's inspiring journey and her efforts to promote equitable access to home infusion? 👇 Check out the full blog post in the comments below! #InnovatorsOfHomeInfusion #NHIAFellow2024

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

Less than 3 weeks to go until our next webinar 📣 Amplifying the rare disease patient voice in the HTA process in UK and Ireland The webinar will explore the following questions: ➡ How and when might patients, caregivers and patient advocacy groups be involved in NICE, SMC and NCPE HTA processes?  ➡ How can the biopharma industry engage with patients, caregivers and patient advocacy groups on upcoming HTAs, whilst meeting industry codes of practice?  ➡ How do patients and patient advocacy groups want to engage with biopharma companies? What is best practice and what should be avoided?  ➡ What are patients’, caregivers’ and patient advocacy groups’ experiences of participating in HTA consultations and committees? This webinar is ideal for Market Access, HTA, government affairs and patient advocacy teams in UK and Ireland. The session will be recorded and distributed post event. Register your place now: https://lnkd.in/ewzUBSKy #Webinar #HTA #PatientAdvocacy #PatientAccess