What makes a rare disease community powerful?

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.

Finding Patients and Building Rare Communities

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.

The Criticality of Publications in Rare Disease

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.