Explainers

At the heart of genetic counseling is empowering patients and families with knowledge of genetic disease and being a supportive pillar as they navigate their journeys.

I believe that advocates are quintessential parts of the ecosystem for change because they inform lawmakers and health leaders of outdated policies and healthcare priorities.

Seeking care for a rare condition, which often means having few options to begin with, can make this even more challenging.

Years of systemic racism have prohibited or limited the ability of many Black individuals from obtaining a medical education. For Black patients and families impacted by rare disease, seeking health care professionals who are also Black can be uniquely challenging.

Some basic information for anyone with 504s or IEPs on their mind this back-to-school season.

Only 5 percent of rare diseases have approved treatments. How could drug repurposing help?

Autism is a behavioral diagnosis, so it’s possible for individuals with rare single-gene disorders to receive an autism diagnosis on top of their rare disease diagnosis.

For many rare diseases, early diagnosis and treatment is crucial.

Learn more about the causes, symptoms and treatments available for Wilson disease, a rare condition that causes free copper to build up in the liver.

Once AllStripes collects your medical records, how do we use them for research? One important step is verifying the completeness and depth of the data from each participant.

Patient registries can be an important tool to centralize information about a rare disease community. AllStripes is a research platform that can complement registry efforts by providing the audit-trailed and research-ready data needed to push research forward.

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.

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

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

We take security and data privacy very seriously — in fact, it’s one of our top priorities.