rareLife solutions

rareLife solutions collaboration. science. technology. our collaborative teams benefit rare patients' lives by develop

rareLife solutions is heading to the World Orphan Drug Congress USA 2026.Hugh Bartlett will be onsite in Boston from Tue...
06/04/2026

rareLife solutions is heading to the World Orphan Drug Congress USA 2026.
Hugh Bartlett will be onsite in Boston from Tuesday, June 9 through Thursday, June 11, collaborating with innovators, advocates, and changemakers advancing rare disease research, drug development, and patient access.
We know rare. We think rare. And we believe strategic problem-solving drives meaningful progress.
If you will be at WODC, let’s connect.

On World Neurofibromatosis Type 2 (NF2) Awareness Day, rareLife stands with individuals, families, caregivers, and advoc...
05/22/2026

On World Neurofibromatosis Type 2 (NF2) Awareness Day, rareLife stands with individuals, families, caregivers, and advocates affected by this rare genetic disorder.
NF2 is characterized by slow-growing tumors that develop in the nervous system, most commonly vestibular schwannomas affecting hearing and balance. Individuals living with NF2 may also experience vision changes, tinnitus, weakness, pain, and other neurologic complications that can significantly affect daily life.
For rare communities, awareness matters. Earlier recognition, stronger research, multidisciplinary care, and continued innovation can help improve outcomes and quality of life for those navigating NF2.
At rareLife solutions, we know rare. We think rare. And for us, it’s personal. We are committed to advancing science, amplifying patient and caregiver voices, and supporting communities driving progress in rare disease.
Awareness drives understanding. Understanding drives action.

Meet Michele Kinrade, Senior Medical Writer at rareLife solutions.Michele’s rare superpower is purpose-driven passion. I...
05/20/2026

Meet Michele Kinrade, Senior Medical Writer at rareLife solutions.

Michele’s rare superpower is purpose-driven passion. Inspired by her daughter’s rare disease journey, she brings a deep commitment to advancing science and research that can improve the lives of patients and families.

Michele uses her experience to keep teams grounded in what matters most—patients. By reminding colleagues of the real people behind the work, she fosters empathy, collaboration, and a shared sense of purpose. Her most fulfilling moments come from knowing her work can make a difference, especially for children.

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

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!

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