Chiesi Global Rare Diseases

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Chiesi Global Rare Diseases

We are making a rare difference.

03/31/2026

is rare and often mistaken for more common metabolic conditions. Recognition of symptoms can be the first step toward clarity and a correct diagnosis.

In occasion of , learn more about what may be hiding in plain sight by visiting: r.chiesi.com/GRD256FB.

03/30/2026

Ahsan's story is one of family and community. When his father, Hassan, first learned about his son’s diagnosis, the questions came quickly. What would life look like? Who would understand? Where could answers even come from? Through social media, Hassan found other parents like Cynthia—people who had been there, who understood the weight of loving and caring for a child with a rare condition. That connection changed everything. Watch their story and learn more about living with HoFH: r.chiesi.com/GRD247FB

03/26/2026

Thalassemia may be part of the story, but it doesn’t get to dictate who the person is.

Frequent transfusions can disrupt daily life routines and social connections, influencing both emotional well‑being and everyday life. That’s what makes connection, understanding, and community all the more essential.

Share this post and click the link to learn more about living with this rare disease: r.chiesi.com/GRD245FB

03/16/2026

This , colleagues across the globe paused to truly listen to the voice of the community through the “Sound of Rare” immersive experience. Everybody shared their takeaway on a small piece of paper that became part of a physical and digital chain, symbolizing how listening links us.

Through this listening mindset, we were reminded of how much authentic representation matters to people living with a rare disease. That’s why we are committed to portraying the community with real, respectful, and authentic imagery. And we invited colleagues to join us by signing our Pledge Wall — a shared promise to uphold dignity, visibility, and inclusivity in every story we tell.

Because listening is where understanding begins and commitment takes root.

03/10/2026

Living with a rare disease often means navigating more than what's visible— but its emotional impact doesn’t have to shape every part of life.

We believe that acknowledging these emotional experiences is an important step toward to ensuring people feel supported, understood, and empowered.

By listening, learning, and creating space for real conversations about mental health, we aim to help ensure no one feels unseen or unheard.

To learn more, visit r.chiesi.com/GRD248FB

03/02/2026

After , the voices we heard still echo. Because when we truly listen—fully, openly, without distraction – something changes. We don’t just hear stories. We feel them.

We invited our colleagues to take a moment to pause and experience these stories firsthand because they are meant to be heard, to resonate, and to connect us to our “why?”

Today, we’re sharing a glimpse of that experience here –so you can listen too.

02/28/2026

Listening is more important than you can imagine.
So is being heard.
So is being seen.
And so is knowing your story matters.

The words of Ana, Phil, and Tyler remind us that raising awareness only works when we are truly present enough to hear what’s being said.

This , we want to amplify “More Than You Can Imagine” global campaign by EURORDIS-Rare Diseases Europe Diseases Europe while also highlighting the power of listening to the rare disease community.

Because when we listen, understanding grows. And when understanding grows, change becomes possible.

Learn more at: rarediseaseday.org

Rare Disease Day

02/24/2026

In 2025, as we do everyday, we listened to people living with a rare disease and carried those voices into our daily work, our meetings, and our conversations across the company. Those moments shaped us. They grounded us. They continue to remind us why we’re here.

As approaches, we pause to listen even more closely. Because when we listen deeply, we don’t just understand more. We become better at standing beside the community. Metrics matter, but the real outcome we strive for comes when we are able to make a rare difference.

02/20/2026

Being a B Corp isn’t about checking a box – it’s about raising the bar. Chiesi Group is proud to be re-certified as a B Corp, reflecting years of progress and continuous improvement. From our first certification to today, we have strengthened our performance across key environmental, social and governance areas, as part of our commitment to create positive change for people and the planet. Learn more at: r.chiesi.com/GRD239FB

02/12/2026

Across countries and communities, people living with EB share different stories but similar emotions: being stared, feeling left out, and wanting simply to belong.

Mental and emotional well‑being aren’t secondary – they’re just less visible, and for this reason too often overlooked.

These stories remind us that mental health support is not separate from care – it is part of what it means to truly see and support the rare disease community.

01/26/2026

To get a true understanding of any rare disease, it is important to look beyond the statistics. That’s where listening comes in—not as a one-off action, but as an ongoing approach.

So we spoke with caregivers – the people that face the realities of ultra-rare conditions like alpha-mannosidosis on a daily basis to share these perspectives and insights to inform the scientific community.

Learn more by visiting r.chiesi.com/GRD236FB.

01/15/2026

Every story told is a step toward understanding.

In the rare disease community, storytelling is more than sharing experiences – it’s a powerful tool for change. It can influence policy, accelerate diagnosis, and shape access to care.

That’s why we supported the Debra International storytelling workshop: to help amplify the voices of people living with EB and empower the community to be heard.

Learn more about our commitment to the community at r.chiesi.com/GRD216FB

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https://chiesirarediseases.com/

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