Unwavering and unified support
It can be a daunting prospect to start a patient advocacy group, but the dedication and guidance of the rare disease community are unparalleled. Patients and patient advocates provide both the glue that keeps the community together and the energy and hope to keep it moving forward. Those who bear the burden of disease will always persist in their unshakeable motivation to dramatically propel scientific research forward.
Sarah Theos, executive director, and Alex Theos, chief scientific officer, learned this early on as they joined forces with other dedicated parents to launch the CRMO Foundation after they received their son’s diagnosis. Chronic recurrent multifocal osteomyelitis (CRMO) is a rare and predominantly pediatric autoinflammatory bone disease of unknown cause. Typical onset is between 7-10 years of age with an average two-year delay in diagnosis due to multiple factors including the lack of awareness within the medical community and the absence of a clear diagnostic test.
The CRMO Foundation believes it’s imperative to develop and support a network of scientists, patients, and clinicians dedicated to working together, sharing resources and biosamples, and striving towards the common goal of better patient outcomes.
“Those who bear the burden of disease will always persist in their unshakeable motivation to dramatically propel scientific research forward.”