WE KNOW RARE. WE THINK RARE.
We improve rare drug development and commercialization for industry and the families they serve.
Who We Are
Individually we are scientists, planners, creatives, writers, entrepreneurs, thinkers, and doers. We are also the parent of a child with a rare disease, we are the friend and family member of someone living with rare disease, we are the caregiver, we are the carrier, we are the face of rare disease — together, we are rareLife solutions.
Rare is personal
We have broad expertise and experience across more than 65 rare indications, including a growing list of oncology indications. We offer rare compassion and focus.
What We Do
From the small, hard-to-reach communities that define rare disease groups, the stories and the connections they forge require a different approach. We offer a broad suite of services that are designed to make drug development and commercialization better for industry and families.
Our publications and scientific communications services are structured into six categories: Strategy, Community building, Scientific scaffold, Content development, Events, and Internal training. As the full-service rare scientific agency, we craft a tailored blend of innovative solutions to meet our clients’ unique needs.
Medical Publications
Our rare philosophy focuses on 3 things: Science, Community and Access. Our medical publications program considers all of those critical factors in the development and execution of our client’s programs.
Some of our rare publications principles include:
- Progressive publication thinking: Like everything else in rare, publications are different and deserve a fresh, hyper-targeted approach.
- Enhancing the rare presence: Just 0.2% of medical literature is composed of rare-focused publications. We help you find your share of voice in rare. It is so important that we do, but it is more important that you do.
- Core commitments: We believe in open access. We believe in patients as authors. We believe in informing trial participants of results as part of the publication plan. We believe in communicating results to the whole community via PLSPs and compliant social media posts.
Scientific Communications
Our approach to scientific communications celebrates that rare patients, advocates, and caregivers are critical shapers of their rare disease ecosystem.
- Rare insights: Understand the patient journey, define the burden of disease, find patients - our experienced team uses rare community insights to help you build a strategic foundation that is designed to work in your rare ecosystem.
- Rigorous content: Build clinical suspicion, reduce diagnostic delays, optimize care - our advanced-degree writers, strategists, and community experts collaborate to develop content that educates and motivates.
- Dynamic events: Build community, motivate, generate insights - our live and digital events employ adult learning principles and experiences that enable change.
AI-Powered Strategic Medical Publications Insights Tool (mApIt)
mApIt is a cutting-edge, standalone, AI-powered application developed by medical publications experts to streamline the identification of relevant insights and support strategic publication planning for rare disease therapies in development. mApIt aggregates and analyzes indication-specific data in minutes, replacing months of manual effort, and serves as the foundation for market-responsive publication programs.
- Fast insights: Rapidly gather key information to inform your publication plans.
- Deep understanding: Gain a comprehensive view of the indication-specific publication landscape.
- Therapeutic area insights: Identify opportunities to differentiate and position your program through strategic, market-responsive publication planning.
Meet Our team
When we say we live rare – we mean it. 70% of the rareLife team has been personally impacted by rare diseases. Here are some of our team’s stories.
Sonali | Rare Mom
When Sonali’s son Ivaan turned nine months old, he began developing a swelling on the right side of his face. The swelling grew rapidly, prompting Sonali and her husband Arjun to consult Ivaan’s paediatrician. Suspecting an infection, the paediatrician recommended an ultrasound, which was initially misread by the radiologist as acute bacterial parotitis. Based on this, Ivaan was prescribed antibiotics. However, as the swelling continued to increase, Sonali and Arjun sought opinions from multiple doctors and radiologists in search of an accurate diagnosis. Eventually, a radiologist friend of Sonali performed another ultrasound, suspected the swelling could be an infantile parotid hemangioma, and recommended she consult a senior radiologist for an MRI. The MRI was reviewed by the senior radiologist, who diagnosed Ivaan with infantile parotid hemangioma, a rare, benign tumor of the parotid gland. Fortunately, after several misdiagnoses and much persistence, Ivaan received the correct diagnosis and is now doing well. After this harrowing journey with her baby, Sonali carries a quiet, enduring empathy for those navigating the shadows of misdiagnoses and delayed treatment, especially in the world of rare diseases.
Lynda | Rare Patient
Lynda was misdiagnosed for a decade with exercise-induced asthma and was prescribed inhalers that were ineffective. One doctor said she was “just out of shape.” During a stress test, a cardiologist noticed that Lynda’s oxygen saturation dropped into the 80s and her blood pressure spiked. Her heart was healthy, so the cardiologist referred her to a pulmonologist with a very clear message: “Tell him to evaluate you and not just throw another inhaler at you. Something’s wrong.” After a series of tests, Lynda was diagnosed with bronchiectasis and Mycobacterium avium complex (MAC) infection. These organisms are harmless for most people but can cause serious lung disease in individuals with bronchiectasis. The cavitary form of the disease can be fatal. Standard treatment for MAC is a 12-18 month course of multiple antibiotics, some with serious side. MAC is slow growing, and Lynda’s case is currently mild. She and her doctor have chosen watchful waiting along with daily nebulized 7% hypertonic saline and airway clearance techniques. MAC is everywhere, but developing an actual infection from it depends on a mix of environmental exposure and individual susceptibility. That specific combination makes it a rare disease. What was so frustrating for Lynda was the delay in diagnosis caused by lack of awareness.
Kim
I’ve worked in medical publishing occupations for 32 years, 20 of which are in agency environments and 13 so far in rare diseases. Rare disease work allows me to meld the intricacies of anatomy and genetics with the tangible impact of care on patients’ and families’ experience. I’m humbled by and constantly learning from the insight and dedication of our physician collaborators. As a person with a common motor disability whose prose is able-bodied, I find publishing, educating, and communicating on rare diseases affecting mobility to be a meaningful act of solidarity.
Dan | Carrier and Caregiver
Dan and his wife Nicole were recently married and pregnant with their 1st child, Nicole is of Ashkenazi Jewish descent while Dan is of Irish, Italian Catholic descent. Their pediatrician decided to test Dan for genetic diseases given Nicole’s ancestry. Later that week they received a panicked call from the doctor because Dan tested positive for Tay Sachs Disease. The doctor urgently requested Nicole get tested as well. Fortunately, Nicole’s test was negative. This experience was in the pre-internet days so the only information the family received was from the pediatrician who put quite a fear into the new couple as they were just entering into parenthood. Dan and Nicole now have 6 kids, all of whom are aware that they may be carriers too, and will get tested as part of their own family planning. As a caregiver, Dan was part of his mother’s care team, who was taken too early by a very rare cancer. There were no treatments, no clinical trials and very little published information. Dan’s family found they knew more about the disease than many of the physicians they met.
Michele | Rare Mom
Michele’s daughter Lizzie exhibited early symptoms that something was not right including being floppy at birth, very slow development and she had a hard time eating. At 2 years old, Lizzie began to rapidly gain weight. Her behavior was increasingly difficult to manage. It took 13 years to get a proper diagnosis of Prader-Willi Syndrome. Like many rare diseases there were no treatments available except behavioral medicines. Sadly, Lizzie was asked to leave her first 2 schools due to those behavior issues. At 19, she moved into group homes until her death at 31. The Lizzie her mother knew was full of love and care for her housemates and the most vulnerable individuals. She had an artistic sense and loved music. Her sense of humor tended towards enjoying adults doing silly things and her favorite roles were caregiver to others and walking Ringo the donkey at Camphill School where Michele was told; “She is the only one more stubborn than Ringo.”
Laura | Rare Mom
Laura’s daughter Abbey was a seemingly healthy, athletic 13-year-old child. One evening Laura was contacted by a long-time family friend who said; “Abbey’s eyes seem enlarged…kind of bulging? I’m not sure how to describe it, but definitely different.” As a precaution, Laura took Abbey to a family doctor then a specialist where she was diagnosed with Graves’ disease and Thyroid Eye Disease. The family was both concerned and scared as they found tons of misinformation in social media including things like: “I’ve lost all my muscle mass…When I wake I have to wait 15 minutes to be able to move…” and, “I couldn’t open a bottle of water and it was hard to pick up my baby.” Like many rare disease families, they found it hard to find credible information anywhere. Fortunately, Laura has a science background and has worked in the pharma space for 25 years, so today the family are informed partners with Abbey’s endocrinologist, and Abbey is thriving as a sophomore in college.
How is rare disease different?
People always say rare is different. We agree. That’s why you need an agency that thinks and acts differently.
Rare is community.
Caregiver burden can be intense and is often forgotten.
Rare is where you have little to no available literature.
Rare is opportunity with a mission.
Rare is finding beauty in uniqueness.
Rare is where your life turns upside down, and you wouldn’t have it any other way.
So many diseases that are so poorly understood.
Rare is urgent, every second counts.
Parents know something is wrong – often when physicians don’t.
Rare is community.
Caregiver burden can be intense and is often forgotten.