Developing a new drug can cost a billion dollars and take more than a decade. That makes investing in new treatments in the rare disease space — where patient populations are small, and the chance of earning a return on that investment even smaller — a risky bet for big pharmaceutical companies. That's a big reason why 95% of the more than 10,000 rare diseases that exist do not have an FDA-approved treatment. But for parents of children diagnosed with those diseases, doing nothing is not an option. And that's fueling a major trend in the rare disease community: medical innovation and breakthroughs that are being driven by the patient groups themselves. Last October, Rare As One — a project funded by the Chan Zuckerberg Biohub that supports patient-led research in the rare disease space — released a report that showed of the 20 organizations it funded when the program launched in 2019, half of them were involved in clinical trials within five years.…