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The case of a woman with unusual symptoms for atypical hemolytic uremic syndrome (aHUS) — including normal hemoglobin levels and mildly low platelet counts — highlights the need for better and more clear diagnostic criteria for this condition, according to researchers. The goal is to ensure that patients can…
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Global Genes has partnered with the Rare Disease Diversity Coalition (RDDC) to advance health equity for rare disease patients and caregivers in underrepresented communities of color. “For rare disease patients, there are many challenges — and for people of color with a rare disease, these challenges are compounded…
The Rare Disease Diversity Coalition (RDDC) awarded $600,000 in grants to ease the disparities faced by rare disease patients of color. These Impact Rare Disease Solution grants will go five RDDC steering committee working groups, which aim to identify problems for rare disease communities and advocate for solutions. The five…
Columnist Annie Dixon offers advice to a reader after fielding a question about whether her family should get genetic testing for aHUS.
Becoming educated and informed about aHUS is a good first step. Here you’ll find general information about the disease, including diagnosis, symptoms, and causes.
It helps to know others have been where you are now. Here’s a collection of our columnist’s words of wisdom to help you along on your aHUS journey.
There is no cure for aHUS yet, but here you can find more information about current therapeutic approaches, as well as experimental treatments that are in the pipeline.
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