Drug development's existing challenges can be even more complex for rare conditions.

Carrie Szeles was told many times “you’re crazy” for thinking something was seriously wrong with her health. Now, she’s often told she doesn’t “look sick.” Through it all, she had to learn to be her own advocate and strongest supporter.

Elise was just weeks away from giving birth to her second daughter when she learned her five-year-old, Keira, had a rare, fatal genetic condition.

Ashly built her career as a speech therapist helping children with complex needs. Now, she’s advocating for her own child — and generations of her family to come.

And how does it help put you in control of your information?