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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.

10/23/2025

Seeing Patricia today — playing pickleball, practicing karate, taking a walk with her dog, surrounded by the love of her family and friends — it’s hard to imagine she went through so many difficult years, marked by the weight of undiagnosed . And yet, the woman she is now was built day by day — through small steps, quiet determination, and a mindset guided by positive thinking.

As Patricia says: "For me, it's been a long, hard journey to get to where I am now, to know what to do, how to deal with it. I felt like my life was over. I have a fantastic life now, I mean, I really have a fantastic life."

Her story shows that the courage and perseverance to believe in better days can help make them real. Just like Patricia did.

🎥 Watch Patricia’s full story at https://itsrareforme.com/story/patricia/

10/22/2025

What happens when you finally get the answers you've been searching for?

In rare diseases, the diagnosis can bring an end to the feeling of uncertainty caused by unexplained symptoms, but this is only the starting point of a new journey: the path toward finding balance through optimal disease management—both clinically and in everyday life.

This journey is different for everyone. After the diagnosis, it took Elena 23 years to reach that balance and when she finally did, she felt like she was reborn.

🎥 Watch Elena's full story at https://itsrareforme.com/story/elena/

10/21/2025

How do you introduce yourself? A name? A job title? A condition? For Michael, he lives with , but this does not define him. He’s a creator, a husband, and also an advocate. This story challenges the labels we all live with and reminds us that there’s more to everyone than meets the eye.

Visit r.chiesi.com/GRD17 to watch the full video featuring Michael and Abrar produced for us by BBC StoryWorks Works Commercial Productions.

10/17/2025

Gianfranco unexpectedly lost his central vision at a young age due to a condition called , but that didn’t stop him from recognizing his full potential as an actor. Listen to his inspirational story by visiting r.chiesi.com/RFM10.

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