Chiesi Global Rare Diseases

At this year’s 22nd Annual WORLDSymposium Meeting, our team will support 16 abstracts highlighting clinical insights and outcomes for people living with Fabry disease and alpha-mannosidosis. We are proud to be organizing a medical symposium to explore long-term clinical integration in Fabry disease management. These scientific contributions reflect our commitment to the lysosomal storage disorder community. We believe that meaningful progress comes from combining robust data with the authentic experiences of caregivers and people living with #RareDiseases. Click the link to learn more about our commitment to the rare disease community: https://lnkd.in/dym6gP2S #WORLDSymposium2026 #ChiesiGlobalRareDiseases #Fabrydisease #AlphaMannosidosis #LysosomalStorageDisorders

Introducing “Advocacy in Action”, a new series dedicated to amplifying the voices shaping change in the #RareDisease community. We are honored to introduce Jerry Walter, Founder and President of The National Fabry Disease Foundation. Living with #Fabry disease for decades, Jerry has transformed his experience into a lifetime of advocacy, working to expand resources and support for others. Progress in rare disease is never made alone. It grows through the partnerships of patients, caregivers, advocates, and innovators who join forces to advance treatments and bring hope. At Chiesi, we’re proud to collaborate with leaders like Jerry to ensure that innovation aligns with what matters most: the needs of our community. Stay tuned as we continue to share voices and stories – each one inspiring change and driving progress. 🔗 https://lnkd.in/duv5ZXwD #ChiesiGlobalRareDiseases

On November 7–8, our team joined government officials, health leaders, academia, and patient advocates at the #ASEAN Rare Disease Policy Forum in Kuala Lumpur, Malaysia. Chaired by the Ministry Of Health, Malaysia (KKM) and organized by the Asia Pacific Alliance of Rare Disease Organisations (APARDO) with support from RARE DISEASES INTERNATIONAL (RDI), the Forum marked an important step toward coordinated regional action to improve diagnosis, treatment, and research for people living with #RareDiseases. In his keynote, YB Datuk Seri Dr. Dzulkefly Ahmad, Minister of Health Malaysia, announced that Malaysia will table a comprehensive ASEAN Roadmap on Rare Diseases at the ASEAN Health Ministers Meeting in 2026, outlining shared priorities to strengthen awareness, capacity, and sustainable financing. We were proud to support the Forum and engage with representatives to advance a shared vision: timely diagnosis, equitable access to treatment, and dignity in care for those living with a rare disease. We thank MOH Malaysia, the organizers, and ASEAN partners for their leadership and collaboration. Learn more about our work in rare disease: https://lnkd.in/e_tQGeBd #ChiesiAroundTheWorld #ChiesiGlobalRareDiseases #United4Rare #GlobalHealth

For people living with Epidermolysis Bullosa (EB), everyday moments, such as getting dressed or sharing a hug, require thoughtful care, underscoring the need for collaboration to address the physical, emotional, and systemic challenges that shape life with #EB. From January 20-22, our team will join the EB2026 Brasil International Congress, organized by Debra Brasil, to engage in meaningful dialogue within the global EB community. We are proud to sponsor and host a lunch panel focused on the lived experience of EB, addressing psychological impact, access to care, quality of life, and nutritional challenges, alongside opportunities to advance more inclusive, community-driven care. We look forward to connecting with advocates, families, clinicians, and researchers who continue to drive progress and innovation. Learn more about our focus: https://lnkd.in/eG8VM8F6 #EB2026 #DEBRAInternational #EpidermolysisBullosa #ChiesiGlobalRareDiseases

In October, our team at Chiesi organized a workshop at the World Orphan Drug Congress (#WODC) in Amsterdam, bringing together leaders from the rare disease community to explore how Digital Health and AI can enhance care for lysosomal storage disorders (LSDs). During the workshop, we addressed key challenges in rare diseases—such as delayed diagnosis, fragmented care pathways, and limited access to expertise—and discussed how digital innovation can help bridge these gaps by empowering the rare disease community and informing future research and policy. Thank you to EVERSANA and all participants for your valuable insights. While digital innovation offers an unprecedented opportunity to drive lasting progress for the rare disease community, it’s collaboration that makes meaningful, lasting impact. Learn more about our work: https://lnkd.in/gcFjQYDg #ChiesiAroundTheWorld #WODC2025 #WorldOrphanDrugCongress

Art finds beauty in the unexpected. Imagine a cup of coffee—not as a drink, but as color on paper, becoming art. Today, on #WorldWatercolorDay, we're sharing Ana's story because her technique of treating coffee like watercolor shows us that imagination can transform even the most ordinary things into something precious. Just as coffee becomes art in her hands, we too can turn our lives into something beautiful with what we're given—even if it doesn't seem special, even when it feels painful. Ana says when she's in her studio, the world stops. It's her escape from the long daily routines that living with #EpidermolysisBullosa requires. It's a reminder for us all: we need spaces where life's demands can wait, and we can simply be ourselves. To explore more of Ana's beautiful creations, visit https://lnkd.in/dZef7Nrs 🎥 Watch Ana's full story at https://lnkd.in/d_-JxSG6 #ItsRareForMe #ChiesiGlobalRareDiseases #RareDiseases #WatercolorDay #Watercolor #EB

Strength isn't always loud—it can also be found in the authenticity and the courage to show yourself. That's how Ana grew up: learning never to hide her condition. Her parents encouraged her to face life with confidence, which made her strong, self-assured, independent in her choices and determined to follow her dream of becoming an artist. When Ana speaks openly about #EpidermolysisBullosa, it can be disarming at first, but it helps break down prejudice and ultimately puts others at ease. For Ana, talking about her condition is both a personal act and a way of advocating for the community. Today, Ana has become the example she once wished to see as a child: a confident woman, an artist, a person to look up to. 🎥 Watch Ana's full story at https://lnkd.in/d_-JxSG6 https://lnkd.in/dZef7Nrs #ItsRareForMe #ChiesiGlobalRareDiseases #RareDiseases #EB

On this #WorldKindnessDay, Sandra's story reminds us that kindness does not always come easily, especially when you are going through a lot. Yet, it can make a huge difference not only for others, but also for yourself. Sandra experienced this first hand when she had to face #Fabry disease diagnosis, struggling to find anything positive in that moment. Once she found a way to cope with it, she started helping others and realized this was beneficial to her too. That is when she finally found the bright side she was looking for: the people she met along her journey and the relationships she built within the community. 🎥 Watch Sandra’s full story at https://lnkd.in/dSVcxd54 #ItsRareForMe #ChiesiGlobalRareDiseases #RareDiseases #Kindness

We’re proud to announce another important step in our mission to transform the lives of people with #LysosomalStorageDisorders (LSDs). Through a new exclusive license and development agreement with Aliada, a subsidiary of AbbVie, we’re advancing blood-brain barrier (BBB)-crossing platform technology, part of our multi-pronged approach to address the significant neurological and cognitive challenges of LSDs. This collaboration reflects our deep and ongoing commitment to pushing the boundaries of research to make a meaningful difference for the LSD community. Read the press release here: https://lnkd.in/ey_QXeaA

Last month, our team was in Washington, DC, for the #NORD2025 Breakthrough Summit, where we were proud to participate as a Bronze Sponsor and join the #RareDisease community to drive dialogue and contribute to this year’s theme, “From Voices to Breakthroughs.” Our team came together to listen to the inspiring voices shaping the future of rare disease care, from young advocates sharing their lived experience to powerful discussions on AI, collaboration, legislative developments, and advancements in gene and cell therapies. Our Patient Advocacy team was actively involved throughout the event, with Andrés L. Treviño Fernández joining the panel “Rare Diseases Communities of Care: Integrating Mental Health Support into Treatment” and the team presenting a poster on the impact of acromegaly on mental health, reinforcing our belief that rare disease care must support the whole person, not just the symptoms. 👉 This type of community perspective grounds our work. Learn more: https://lnkd.in/eEhnrMiA #NORDSummit #ChiesiAroundTheWorld