When diagnosed with a life-altering condition, the available information can be overwhelming, unclear, and at times, inaccurate. Even as professionals in the field, we’ve experienced how hard it can be to understand and navigate the healthcare system. We know that treatments developed and approved under tightly-regulated clinical trial conditions may not reflect the real-world environment. Health outcomes still hinge more on where we live than on universal standards of care. We believe that needs to change - and that starts with empowering patients with the information they need to advocate for themselv...read more