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All About Genetic Counseling
by Bissaya Abdella
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.
The Future of Sickle Cell Care
by Wunmi Bakare
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that advocates are quintessential parts of the ecosystem for change because they inform lawmakers and health leaders of outdated policies and healthcare priorities.
How to Find a Culturally Competent Provider
By Kimberly Ramseur, JD, MPH
Seeking care for a rare condition, which often means having few options to begin with, can make this even more challenging.
Tracing the Underrepresentation of Black Physicians in America
By Kimberly Ramseur, JD, MPH
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.
What’s the Difference Between a 504 and an IEP?
By AllStripes
Some basic information for anyone with 504s or IEPs on their mind this back-to-school season.
Everything to Know About Drug Repurposing
By Taylor Kane
Only 5 percent of rare diseases have approved treatments. How could drug repurposing help?
12 Podcasts Highlighting Voices From the Rare Disease Community
By Cat Cooke
Rare Diseases and Autism Spectrum Disorder: What You Should Know
By Taylor Kane
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.
What Is Newborn Screening and Why Is It Important?
By Taylor Kane
For many rare diseases, early diagnosis and treatment is crucial.
10 Things to Know About Wilson Disease
By Taylor Kane
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.
Ensuring High-Quality Data for Rare Disease Research
By Caitlin Nichols, PhD
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.
What Is a Patient Registry, and How Is AllStripes Different?
by AllStripes
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.
What Is a Natural History Study, and Why Is It Important?
By AllStripes
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.
Why Is Drug Development for Rare Diseases So Challenging?
by AllStripes
Drug development's existing challenges can be even more complex for rare conditions.
What Is a Research Consent?
By Kristina Cotter, PhD, CGC
And how does it help put you in control of your information?
How AllStripes Keeps Your Data Private and Secure
by Talea Miller
We take security and data privacy very seriously — in fact, it’s one of our top priorities.
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