rareLife solutions

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rareLife solutions is heading to The Professional Society for Health Economics and Outcomes Research (ISPOR) 2026.Laura ...
05/15/2026

rareLife solutions is heading to The Professional Society for Health Economics and Outcomes Research (ISPOR) 2026.
Laura will attend Monday, May 18, and Tuesday, May 19, to connect with innovators, collaborators, and advocates advancing evidence generation, patient-centered research, and access in rare disease.
At rareLife solutions, we know rare. We think rare. And we believe meaningful connections drive meaningful progress.
Let’s connect at ISPOR 2026.

On International MPS Awareness Day, we stand with individuals, families, caregivers, and advocates affected by mucopolys...
05/15/2026

On International MPS Awareness Day, we stand with individuals, families, caregivers, and advocates affected by mucopolysaccharidoses (MPS) and mucolipidoses (ML).

MPS and ML are rare inherited lysosomal storage disorders caused by missing or ineffective enzymes that impair the breakdown and recycling of certain substances within cells. Over time, this accumulation can lead to progressive multisystem disease affecting physical, neurologic, and cognitive health. Currently, there is no cure for these disorders. Medical care is directed toward symptom management and improvement of quality of life. Life expectancy varies according to disease severity.

For rare communities, awareness is more than recognition; it is a pathway to earlier diagnosis, stronger research, improved care, and meaningful progress.

At rareLife solutions, we know rare. We think rare. And for us, it is personal. We remain committed to advancing science, amplifying patient and caregiver voices, and supporting communities driving change in rare disease.

Awareness drives understanding. Understanding drives action.

May is Ehlers-Danlos Syndromes (EDS) and Hypermobility Spectrum Disorders (HSD) Awareness Month, a time to increase awar...
05/07/2026

May is Ehlers-Danlos Syndromes (EDS) and Hypermobility Spectrum Disorders (HSD) Awareness Month, a time to increase awareness and understanding of complex, often underrecognized conditions.

The EDS are a group of 13 heritable connective tissue disorders caused by genetic changes affecting connective tissue and commonly present with joint hypermobility, skin hyperextensibility, and tissue fragility. HSD also involve joint hypermobility, along with pain, instability, and multisystem symptoms such as fatigue and autonomic dysfunction.

For many patients, these are invisible conditions that require earlier recognition, improved education, and more coordinated care.

At rareLife solutions, we know rare, we think rare, and for us, it’s personal. We are committed to advancing science, amplifying community voices, and improving access for individuals living with rare conditions such as EDS and HSD.

Awareness drives understanding. Understanding drives action.

May is Prader-Willi Syndrome (PWS) Awareness Month—a time to build understanding and drive meaningful action.PWS is a ra...
05/05/2026

May is Prader-Willi Syndrome (PWS) Awareness Month—a time to build understanding and drive meaningful action.

PWS is a rare, complex genetic disorder caused by loss of function of specific genes on chromosome 15. Affecting ~1 in 15,000 births, it is the most common genetic cause of life-threatening childhood obesity and is characterized by hyperphagia—an intense, persistent drive to eat—along with developmental, hormonal, and behavioral challenges.

At rareLife solutions, we know rare, we think rare, and we know that behind every diagnosis is a community that deserves better science, stronger awareness, and real progress.

Awareness starts the conversation. Action moves it forward.

On Undiagnosed Day, we recognize the millions of rare disease patients still searching for answers.For many, the journey...
04/29/2026

On Undiagnosed Day, we recognize the millions of rare disease patients still searching for answers.
For many, the journey to a diagnosis can take years—marked by uncertainty, misdiagnoses, and unanswered questions. Raising awareness and advancing genomics are key to changing that path.
At rareLife solutions, we stand with patients and families navigating the unknown—committed to bringing clarity, connection, and hope.
Learn more about our work at www.rarelifesolutions.com

Meet Lynda Logan, Director of Client Solutions at rareLife solutions.Lynda’s rare superpower? Flexibility and problem-so...
04/22/2026

Meet Lynda Logan, Director of Client Solutions at rareLife solutions.

Lynda’s rare superpower? Flexibility and problem-solving. She thrives on turning last-minute changes and tight deadlines into actionable plans—keeping projects on track no matter what comes her way.

She helps her team and clients work better together by setting clear roles, responsibilities, and timelines—and checking in regularly to ensure everyone feels supported. Collaboration + clarity = success.

The moments that connect Lynda to the rare disease community are what make her work truly meaningful. Hearing a patient describe how her condition impacts daily life reminded Lynda why every project matters to the rare disease community.

At rareLife solutions, rare is personal—and Lynda brings that dedication to every project, every day.

Connect with Dan Donovan and Hugh Bartlett at the 22nd Annual Meeting of ISMPP (April 20-22, 2026).Centered on this year...
04/20/2026

Connect with Dan Donovan and Hugh Bartlett at the 22nd Annual Meeting of ISMPP (April 20-22, 2026).

Centered on this year’s theme—The Integrated Era: Purpose, Partnerships, Personalization—ISMPP 2026 highlights the importance of aligning stakeholders, strengthening collaborations, and delivering more meaningful, data-driven scientific communications.

Take advantage of this opportunity to exchange insights, share best practices, and explore how integrated approaches are shaping the future of rare medical publications. Chat with Dan and Hugh to learn how rareLife solutions is driving impact in the rare disease community through innovative, patient-centered communications.

We're excited to engage with colleagues across the medical publications community!

Connect with Dan Donovan and Hugh Bartlett at the 22nd Annual Meeting of ISMPP (April 20-22, 2026).Centered on this year...
04/17/2026

Connect with Dan Donovan and Hugh Bartlett at the 22nd Annual Meeting of ISMPP (April 20-22, 2026).
Centered on this year’s theme—The Integrated Era: Purpose, Partnerships, Personalization—ISMPP 2026 highlights the importance of aligning stakeholders, strengthening collaborations, and delivering more meaningful, data-driven scientific communications.
Take advantage of this opportunity to exchange insights, share best practices, and explore how integrated approaches are shaping the future of rare medical publications. Chat with Dan and Hugh to learn how rareLife solutions is driving impact in the rare disease community through innovative, patient-centered communications.
We look forward to engaging with colleagues across the medical publications community—see you there!

MAPS 2026 energized, challenged, and inspired two of our rareLife colleagues. Here are their top three takeaways, shaped...
04/13/2026

MAPS 2026 energized, challenged, and inspired two of our rareLife colleagues. Here are their top three takeaways, shaped by a rare disease perspective.

🔹 AI is a force multiplier, not a replacement.

A recurring theme throughout MAPS was the role of AI and the question: “Will it replace my job?” Our perspective is clear—especially in rare. AI will not replace the human insight, empathy, and community understanding required in rare disease. But agencies that don’t embrace AI will fall behind those that do. In a space where data are scarce and every insight matters, AI can help us uncover patterns faster, amplify patient voices, and accelerate development timelines. (Curious how we’re applying AI in rare? Let’s connect.)

🔹 Hands-on collaboration is critical to solving rare challenges.

The workshops stood out as powerful opportunities to engage in real-world medical affairs challenges alongside industry and agency peers. In rare disease—where patient populations are small and journeys are complex—these collaborative, applied discussions are essential. They mirror the cross-functional, community-driven approach needed to truly move the needle for patients and families.

🔹 In rare disease, continuous learning isn’t optional—it’s essential.

MAPS reinforced something we deeply believe: the learning never ends. Rare disease is constantly evolving—with new science, new voices, and new expectations. Staying curious, listening to communities, and continuously advancing how we think about science, community, and access is not optional—it’s foundational to doing this work well.

At rareLife solutions, we don’t just work in rare—we live it. And gatherings like MAPS remind us why that matters.

rareLife solutions is pleased to announce that our Founder & CEO, Dan Donovan, will be presenting at UConn Rare Disease ...
04/06/2026

rareLife solutions is pleased to announce that our Founder & CEO, Dan Donovan, will be presenting at UConn Rare Disease Day at the UConn School of Pharmacy on April 7, 2026.

Dan will lead a session titled “The Rare Disease Landscape,” where he will share insights into the evolving challenges and emerging opportunities shaping the rare disease space.

Heading to Denver? Catch up with rareLifers Dan Donovan and Hugh Bartlett at the MAPS Americas Meeting 2026 (March 22-25...
03/19/2026

Heading to Denver? Catch up with rareLifers Dan Donovan and Hugh Bartlett at the MAPS Americas Meeting 2026 (March 22-25) as MAPS celebrates a decade of advancing Medical Affairs!
Don’t miss this chance to exchange insights, share best practices, and explore the latest trends shaping the future of Medical Affairs. Connect with Dan and Hugh to discover how rareLife solutions is driving real impact in the rare disease community through innovative publications and scientific communications.
We’re excited to engage with leaders across Pharma, MedTech, BioTech, and Agencies! See you there!

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