Chiesi Global Rare Diseases

Home
United States
Boston, MA
Chiesi Global Rare Diseases

We are making a rare difference.

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.

10/29/2025

Behind every diagnosis is a person with a story of resilience, courage & hope. But a rare disease is never just about symptoms—it’s also about the emotional burden, the years of feeling unseen and misunderstood. That’s why raising awareness matters: so people like Jonathan are recognized, supported, and can get the answers they need sooner. As we approach Day, share this to spread this message and visit rethinkacromegaly.com to learn more.

10/28/2025

For most, touch is the simplest way to connect, but for those living with , every touch is both a longing for closeness and a moment of vulnerability. Even the lightest contact can mean pain because of the fragile skin. That’s why the fist bump has become more than the community greeting—it’s a symbol of respect, resilience and human connection. It’s a gesture that says: “I see you. I stand with you.”

This is the core of the new awareness campaign “Every Touch Tells A Story” that goes beyond the disease and considers the patient as a human being with a story that deserve to be seen, heard, and understood.

During , help us amplify every story that every touch conveys.

Learn more at www.livingwitheb.com

10/25/2025

What if wearing your favorite outfit could cause painful wounds on your body? Imagine if every shirt, every seam, and every tag wasn’t just clothing—but a potential source of pain?

For people living with , every stitch can feel like an obstacle course. And every outfit tells a silent story.

This year, during , join the “INSIDE OUT” campaign by Debra International help weave a stronger community and raise awareness of this rare disease by sharing this post.

Address

Boston, MA

Website

https://chiesirarediseases.com/

Alerts

Be the first to know and let us send you an email when Chiesi Global Rare Diseases posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Contact The Practice

Send a message to Chiesi Global Rare Diseases:

Shortcuts

Want your practice to be the top-listed Clinic in Boston?