A devastating diagnosis is enough to make anyone despair, but some hardy individuals respond by propelling themselves into action. While many diseases have support groups for exchanging information and referrals, some have also spawned patient-led movements that focus primarily on finding treatments and cures. Determined patients are getting clinical studies funded, using data platforms to share medical records, knitting fragmented research approaches together, and tracking down others with similar diseases to build on shared experiences. What makes someone take science into their own hands? How are patients building movements to accelerate medical progress?