Rocket Pharmaceuticals’ Post

We want to answer your IgG4-RD questions! 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 We will address as many questions as we can, mindful of time constraints! #igg4rd #igg4relateddisease #raredisease #rarediseaseawareness

Empower change in clinical trial recruitment! 🌟 Join WeHealth on a transformative journey where patients lead the way to engagement, diversity and innovation. 🚀 Discover how our grassroots advocacy is reshaping patient recruitment, creating a more inclusive and effective approach for clinical trial leaders. Let's revolutionize together!  #WeHealthInnovation #ClinicalTrialDiversity #PatientsLeadTheWay

🌟 Elevating Rare Disease Advocacy 🌟 Embracing the extraordinary journey of advocating for rare diseases! 🦋💙 Join me in championing the cause of patients facing unique challenges. Every voice matters, and together, we can create a symphony of support and understanding. Let's be the beacons of hope, fostering a community where rare diseases are not just acknowledged but embraced with empathy and resilience. 🌈 Your involvement in patient advocacy can make a significant impact, shining a light on the path to better awareness, research, and ultimately, improved lives. Together, let's turn challenges into opportunities, and obstacles into stepping stones. 🚀 Join the #RareDiseases advocacy movement on this empowering quest for change. Together, we'll navigate uncharted waters, celebrate victories, and build a network that transcends boundaries. ✨Are you ready to be a catalyst for transformation? Let's connect, collaborate, and make a difference. 🤝 Your support is not just a gesture; it's a powerful force that can spark change and bring rays of hope to those facing the extraordinary. 🌟 You can find my article about this topic on the link >>> https://lnkd.in/deNsuZ7P #RareDiseaseAdvocacy #PatientAdvocacy #EmpowerWithEmpathy

What a great time discussing efficient and responsible use of patient data with this panel at the Advanced Therapies Week! Team Science truly is how we pave the way to better outcomes for our patients. And such an honor to get to meet the Emily Whitehead Foundation team afterwards to discuss patient advocacy for early adoption of advanced therapies in rare diseases! #advancedtherapies

Day one of #patientsaspartners2024 where #parexel is lead sponsor. I will try to share nuggets as we go… Nugget 1 from Roslyn Schneider MD, MSc, FACP, FCCP who spoke about the evolution of patient advocacy. Let’s learn from mistakes-steps of the past and those we will likely make in the future. #patientsfirst means learning from our mistakes!

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.

Patient involvement is wanted and needed in kidney disease research. This #MotivationalMonday, watch our National Patient Meeting Advocacy & Engagement Training Session explaining the value of patient insights and lived experiences in research and clinical trials: https://bit.ly/3u7tVhl #AAKPforPatients

Super important discussion on patient advocay on #AMR!

Parexel recently hosted its first ever Patient Advocacy Group Forum, focusing on how socioeconomic status impacts clinical trial participation. The meeting focused on insights from a Parexel-sponsored survey of 4,000+ patients to better understand barriers to access and foster inclusivity. 📊 Watch below to learn how Forums are connecting representatives of diverse patient groups and using patient insights to shape clinical trials. 🤝 Interested in the survey insights? Find them here: https://lnkd.in/eExWxV3W #PatientAdvocacy #PatientInsights

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