Ultra-rare disease community holds mock funeral at FDA

Four vans turned into the driveway leading up to FDA’s headquarters on Wednesday morning. HHS police cars were already waiting. Officers pulled in front of the vans, lights flashing. They appeared to be anticipating the arrival, though organizers had not notified them in advance.

One hundred and nine people dressed in black, parents and children affected by mucopolysaccharidosis (MPS) disorders, stepped out of the vans, carrying signs...