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Chiesi Global Rare Diseases

We are making a rare difference.

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

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

12/19/2025

Some symptoms can be seen. Others can’t. When Sebastian began losing his vision, nothing about his eyes looked different – which meant many people didn’t understand what he was facing.

Living with LHON hasn’t been easy, but he has learned to be resilient and knows the importance of sharing his story so others feel understood. Watch the video and learn more about living with at r.chiesi.com/GRD241FB.

12/16/2025

Behind every rare disease story are the small, unseen moments — the choices, the adjustments, the worry that most other families never face.

For Jakob, who has ADA-SCID, and his parents, these moments are part of everyday life. They meet each of these moment with patience and love, creating a sense of safety in a world that can feel unpredictable. Watch the video and learn more about ADA-SCID at r.chiesi.com/AS13

12/05/2025

Imagine living with unexplained symptoms for years – searching for answers, only to find that a diagnosis is just the start of a new journey – one filled with uncertainty and a constant search for understanding.

disease can look different for everyone, making it hard to diagnose and even harder to navigate. Learn more about life with this rare disease by visiting r.chiesi.com/FA33.

11/26/2025

What you don’t see can be just as important as what you do. For those living with a rare disease, the emotional journey is often hidden – filled with challenges, resilience, and moments of hope that aren’t always visible to others.

Each story is unique. Each experience is personal. But many share the invisible impact that rare diseases can have on mental and emotional health.

By listening, we can help make the invisible visible – and remind everyone in the rare disease community: you are seen, and you are not alone.

11/23/2025

Art finds beauty in the unexpected. Imagine a cup of coffee—not as a drink, but as color on paper, becoming art.

Today, on , 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 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://www.instagram.com/anarogel

🎥 Watch Ana's full story at https://itsrareforme.com/story/ana/

11/19/2025

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 , 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://itsrareforme.com/story/ana/

https://www.instagram.com/anarogel

11/13/2025

On this , 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 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://itsrareforme.com/story/sandra/

11/01/2025

Today Living with acromegaly often means facing symptoms that others can’t see—and struggles that are too often dismissed or misunderstood. For many, the journey to diagnosis is long and filled with challenges.
That’s why it’s so important to listen to your body and speak up if something doesn’t feel right. No one should have to fight to be heard. In recognition of Day, share this post to help raise awareness, and visit rethinkacromegaly.com to learn more.

10/30/2025

Receiving a diagnosis like , can feel overwhelming and isolating, but finding your community reminds you that you don’t have to face it alone.

Finding a support group can help turn silence into conversation, and isolation into connection. That’s why when Abrar’s family realized there wasn’t a local group for , they decided to create one themselves. Because when rare meets community, the weight feels lighter.

In support of , visit LivingWithEB.com to watch more about Abrar’s story in a video produced for us by StoryWorks Commercial Productions.

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https://chiesirarediseases.com/

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