ITALFARMACO S.P.A.

Last week, the 8th Edition of the Duchenne Patient Academy, a global platform empowering patient advocates in the Duchenne and Becker muscular dystrophy community, took place. The academy exemplifies how collaboration and education can drive and support meaningful change in rare diseases. Over two impactful days, patient advocates, researchers, and industry leaders shared insights on the latest in science, policy, and advocacy strategies related to Duchenne or Becker muscular dystrophy. Our Patient Advocacy lead had the opportunity to highlight our commitment to advancing therapies in the rare disease space and supporting the muscular dystrophy community. Sponsoring and engaging in initiatives like the Duchenne Patient Academy strengthens our connection with the community and amplifies our mission to improve the lives of patients and caregivers worldwide. Together, we’re making strides in turning hope into action for those affected by rare diseases. #RareDiseases #PatientAdvocacy #Italfarmaco #DMD

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Italfarmaco is proud to sponsor an ISPOR Educational Webinar on December 4th 2024, titled: “Leveraging the Value of Clinical Outcomes in DMD for Decision Making”. The webinar will be moderated by Dr. Francois Meyer and will include talks from three highly distinguished experts in DMD: Prof. Valeria Sansone; Conny Pelicaen and Dr. Paolo Bettica. Don’t miss the opportunity to gain insights into DMD, from understanding disease progression to navigating key disease milestones, as well as the complexities of clinical trial design in this therapeutic area. Discover the importance of collaboration among patient advocates, clinicians, and industry to improve patient access to innovative treatments. Italfarmaco’s rare diseases mission is to bring new opportunities to the rare diseases community, with innovation, quality, knowledge and motivation that can help more people su­ffering from rare diseases, than ever before. For additional information: https://lnkd.in/epmWhwBm

National and international clinical research networks (CRNs) are crucial to developing and delivering new therapies for rare disease patients. To better understand how to optimize the impact of CRNs for patient groups worldwide, the International Rare Diseases Research Consortium International Rare Diseases Research Consortium (IRDiRC) and the European Joint Programme on Rare Diseases (EJP RD) discussed opportunities and key considerations for CRNs in 2022. Their conclusions are now published in an article in Frontiers in Medicine, which is co-authored by our team member Samantha Parker. The publication “Fostering the international interoperability of clinical research networks to tackle undiagnosed and under-researched rare diseases” finds that CRNs can serve as a cornerstone for patient groups by enabling them to connect with clinicians around the world. To help deliver a more resilient global research system, a greater global linkage between national CRNs is crucial. Ways to overcome current hurdles include standardized data collection and sharing, as well as connecting expert knowledge and patient input, the paper concludes. At Italfarmaco, we are committed to addressing the unmet needs of the rare disease community and are thus engaged in fostering clinical research networks to ultimately provide solutions that have a real impact on the lives of patients and their families. #RareDiseases #PatientAdvocacy #IRDiRC #CRN #Duchenne #ERN Access the publication at this link: https://lnkd.in/dDdz4a4x  

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