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rareLife solutions

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09/15/2025

World Mitochondrial Disease Week is September 15-21, 2025.
Mitochondrial diseases (mito) affect about 1 in 5000 people, making them the second most commonly diagnosed serious genetic disease after cystic fibrosis. Mito dysfunction is also linked to Alzheimer’s, Parkinson’s, diabetes, heart disease, and some cancers.
This year’s theme—“Decode the Mito Puzzle – Bridging Science and Symptoms”—goes hand in hand with our rare philosophy, highlighting the need to connect scientific discoveries with the lived experiences of patients to improve diagnosis, care, and outcomes.
At rareLife, we support people affected by mito—and all rare diseases—by leveraging our expertise to support treatment development, educate stakeholders, and advance better outcomes.
Learn more about our work: contactus@rarelifesolutions.com

09/07/2025

September 7 is World Duchenne Awareness Day (WDAD), raising awareness of Duchenne and Becker muscular dystrophy.
The 2025 theme, “Family: the heart of care,” honors the essential role families play as caregivers, advocates, and companions for those living with Duchenne.
About 1 in 5000 boys is born with Duchenne muscular dystrophy, a rare genetic disorder that weakens muscles over time, eventually affecting movement, breathing, and the heart. Becker muscular dystrophy is caused by similar genetic changes and also significantly impacts health and quality of life.
At rareLife, we honor the families at the heart of care and remain committed to leveraging our expertise in rare diseases to support treatment development and advance better outcomes. Learn more about our work: contactus@rarelifesolutions.com

09/04/2025

September is National Sickle Cell Awareness Month.
About 100,000 Americans live with sickle cell (SC) disease, a rare, chronic condition where red blood cells harden into a sickle shape. This can cause severe pain, fatigue, infections, and more.
At rareLife, we use our expertise in SC and rare diseases to advance treatments and improve outcomes.
Reach out to learn how we can help: contactus@rarelifesolutions.com

08/26/2025

In rare, everything is different. Your medical publications should be, too.
At rareLife solutions, the rare disease agency, we are more than scientists, writers, strategists, and creatives. We are also rare moms, caregivers, and carriers who design medical publications that reflect the urgency, complexity, and humanity of rare disease.
contactus@rarelifesolutions.com | www.rarelifesolutions.com

08/01/2025

August is SMA Awareness Month—a time to spotlight the strength, needs, and voices of the spinal muscular atrophy (SMA) community.
Learn how you can get involved or attend an event: https://loom.ly/-gGpEJs
Let’s raise awareness, amplify stories, and stand together.

07/29/2025

In rare, everything is different. Your scientific communications should be, too.
At rareLife solutions, the rare disease agency, we are more than scientists, writers, strategists, and creatives. We are also rare moms, caregivers, and carriers who develop content that educates, motivates, and drives meaningful change.
contactus@rarelifesolutions.com | www.rarelifesolutions.com

07/22/2025

In rare, everything is different. Your medical publications should be, too.
At rareLife solutions, the rare disease agency, we are more than scientists, writers, strategists, and creatives. We are also rare moms, caregivers, and carriers who design medical publications and publications programs that reflect the urgency, complexity, and humanity of rare disease.
contactus@rarelifesolutions.com | www.rarelifesolutions.com

07/01/2025

In rare, everything is different. Your scientific communications should be, too.

At rareLife solutions, the rare disease agency, we are more than scientists, writers, strategists, and creatives. We are also rare moms, caregivers, and carriers who design publications and scientific communication programs that reflect the urgency, complexity, and humanity of rare disease.

📩 contactus@rarelifesolutions.com | 🔗 www.rarelifesolutions.com

06/25/2025

We think rare med comms. We live rare med comms. We serve rare communities with our clients through our med comms work.
With deep expertise across 65+ rare and oncology indications, we bring strategy, science, and storytelling together to improve drug development and commercialization—for both industry and the families they serve.
We are scientists and strategists, creatives and caregivers, parents, patients, and people connected by purpose. Together, we are the face of rare disease—and we believe med comms should reflect that.
Today, and every day, we celebrate a smarter, more compassionate approach to scientific communication—one that puts community, access, and impact at the center.

06/03/2025

🔥 Looking for experts who truly understand rare disease? Look no further! rareLife solutions is THE agency that brings your rare science to life. 🧬✨

Our MedPubs and SciComms teams go beyond expectations—engaging stakeholders, closing evidence gaps, and optimizing care. Let’s make a difference together! 💡💙

📩 contactus@rarelifesolutions.com

05/29/2025

📢 At rareLife, we’re not just subject matter experts in medical publications and rare disease—we’re authors too.

In our latest publication, we partnered with colleagues from Pfizer and Digital Science and a rare disease patient/advocate author to evaluate the rare disease medical literature landscape.

Click here to read the full article: https://loom.ly/bdVXgPs

📈 The good news? There's growing use of open access journals.

⚠️ The challenge? Rare diseases still make up a tiny fraction of the medical literature, and PLSPs (Plain Language Summaries of Publications) remain rare.

It’s time to drive change—together. Let’s amplify rare disease research and make science more accessible.

04/15/2025

🎉 Heading to the World Orphan Drug Congress USA in Boston, April 22–24? Don’t miss your chance to connect with Dan Donovan and Hugh Bartlett from rareLife solutions!

💬 Let’s talk orphan drug development, patient access, and how we’re making a real impact through innovative publications and scientific communications in the rare disease space.

📱Message Dan and Hugh on the WODC Event App to schedule a chat!

We’re excited to engage with leaders across pharma, biotech, regulatory, advocacy, payers, and investors. Let’s advance rare together—see you in Boston! 💙

Address

606 Post Road East, #397
Westport, CT
06880

Telephone

+18446638642

Website

http://rareLifesolutions.com/

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