When Jeffrey was young, we travelled all over the world to get answers and meet with the most innovative and well-regarded physicians of the time. We were able to provide him with the best possible care available, but we couldn’t give him his health.
We know that barriers to care results in a prolonged diagnostic journey, without genetic evaluation, and sometimes, unknown diagnosis. Access to care saves lives! Appropriate access to care improves the chances of earlier and precise diagnosis, quality of life, and communication with expert physicians. For vulnerable patients living with PI, access to quality care may provide a better chance at survival and more long-term care options.
This is why the JMCN is so critical for patients living with PI across the globe: the network offers patients direct access to expert immunologists and allows us to confirm valuable genetic diagnostic information for each patient. The JMCN has enabled the Foundation to pursue its goals, raise awareness, and in turn, reduce mortality and morbidity while improving quality of life for as many patients as possible. We have seen an increase in both diagnosed and treated patients across the globe, advocated for greater access to treatments, and encouraged the implementation of standard of care and best practices.
Our journey is far from over: we have miles to go, more paths to pave, more dreams to dream, and more stars to reach! It’s our earnest hope that we will Do Something to ensure that as many suspected and diagnosed PI patients as possible will have unrestricted access to proper diagnosis, treatment, and disease management, no matter where they live.