Patients, advocates, and caregivers are the market-shapers in the world of rare disease. A powerful rare disease community can improve drug development and commercialization, influence regulatory decisions, shape treatment paradigms, and educate others about the disease. What’s more, survey data show that a significant majority of patients would provide feedback to drug developers, and would choose treatments from companies that are engaged with patients over those that are not.
Because we are immersed in rare diseases, both professionally and personally, our team understands the intricacies of rare. Patient finding and community building are cornerstones of rare disease problem solving as they directly benefit individuals living with a rare disease and the rare community at large, while enabling improvements in patients’ experience and care.
Peer-reviewed medical publications remain a mainstay of trusted communication of disease and treatment information. They influence everything from prescribing options to treatment guidelines and payer decisions. They are even more essential in rare diseases as PACs seek to educate themselves and often their physicians.
What does it take to build a sustainable patient community? This white paper outlines rareLife’s three-step, rare-focused approach.
In partnership with the Sickle Cell Disease Association of America, oneSCDvoice empowers people impacted by sickle cell disease.
The “Morquio Syndrome: A Guide to Understanding MPS IV” booklet was designed and executed to support the information needs of people diagnosed with MPS IV and those who support their care.
How many zebras are there, and where are they hiding in medical literature? A literature review of publications on rare diseases.
Developed in partnership with Cancer Prevention Pharmaceuticals, oneFAPvoice is the first community that rareLife solutions created.
‘Negative’ clinical trials in rare diseases and beyond: reclassification and potential solutions