Chiesi Global Rare Diseases

Chiesi Global Rare Diseases We are making a rare difference.

05/08/2026

What does feel like in real life?

This , and every day, we’re listening to and learning from the stories of those living with thalassemia and the families who support them, every step of the way.

Let’s bring more understanding to what these journeys truly look like. Share this post to help spread awareness.

Thalassaemia International Federation - TIF

05/07/2026

Sometimes the most impactful part of the rare disease journey is finding someone who simply understands it. Someone to share advice and experiences with. Or even just to talk – beyond the condition.

For those living with cystinosis, these connections can help them feel supported, even from a distance. This , let’s help more people feel less lonely. Share this post to help raise awareness.

05/04/2026

Managing LDL-C is crucial for reducing the risk of cardiovascular diseases, especially for people living with . Learn more at r.chiesi.com/GRD4 and help spread awareness for .

04/24/2026

Living with disease looks different for everyone. The emotions, the challenges, the moments of resilience – all unique, deeply personal, and shaped by lived experience.

Some stories are quiet. Others are openly shared. Some unfold across generations, touching families in different ways – yet they all deserve to be heard.

For , we join Fabry International Network (FIN) and their global campaign “Living with Fabry, Your Unique Strength” – honoring voices from around the world that show how strength can take countless forms.

04/21/2026

Some challenges are visible. Others quietly reshape everyday life. For people living with disease, symptoms don’t just interrupt the day — they often influence its rhythm.

That’s why having time for oneself becomes so precious. Whether it’s spending time with family, enjoying a hobby, or simply finding a few minutes of stillness, these moments can offer a sense of grounding — the strength needed to face what the disease brings.

During , their stories remind us how powerful these small, personal moments can be, and how much they can help people feel like themselves again.

To learn more, visit r.chiesi.com/GRD255FB.

04/04/2026

disease doesn’t always present the same, especially in women. As a result, it can go unrecognized—sometimes for years.

Lori, Mandie, and Sandra’s stories show how important it is to listen when something doesn’t feel right—and the difference it can make when those experiences are truly heard. In recognition of , they are sharing their stories to help others better understand what living with Fabry disease can look like.

To learn more, visit r.chiesi.com/GRD254FB.

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. ​
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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. ​
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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

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