WE KNOW RARE.
WE THINK RARE.
We improve rare drug development and commercialization for industry and the families they serve.
For us, it’s personal.
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
Medical Publications
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.
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.
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 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.
our clients + Partners
Our approach to scientific communications celebrates that rare patients, advocates, and caregivers are critical shapers of their rare disease ecosystem.
