Resources & Articles

Thaddeus is a smiley 6-year-old with the rare disease NF1. His parents have to manage his care with the limited knowledge available about the disease.

Fred has tried medications, platelet transfusions and surgery — and remains determined to keep having important life experiences.

The goal of a natural history study is to get a big picture view of how a disease develops and improve understanding of that condition. AllStripes can help organizations create high-quality natural history studies of rare conditions — which can feed research for years to come.

Dayna’s studies as a speech pathologist helped her push for a diagnosis for her father’s neurological condition, and gave him a voice as the disease progressed.

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?