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Wes Burian had a dream job as an animated film surfacing supervisor, bringing to life lovable characters like Po from “Kung Fu Panda.” But Burian, now 48, has Fabry disease, and its progression — increasing exhaustion and the beginnings of cognitive impairment he calls Fabry fog — ultimately…
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Those who wish to gain practical tools for living optimally with rare diseases are encouraged to attend the annual Living Rare Living Stronger Patient and Family Forum, hosted by the National Organization for Rare Disorders (NORD) and set this year for June 26-27. The conference brings together patients,…
A new infusion protocol that gradually reduces the amount of time needed for the delivery of the Fabry disease therapy Fabrazyme (algasidase beta) is safe and well-tolerated, a study reports. The study, “Stepwise shortening of agalsidase beta infusion duration in Fabry disease: Clinical experience with infusion…
Eurordis opened a campaign, called Rare 2030 Action, that is seeking to establish a European action plan for rare diseases to ensure that none of the 30 million people in Europe living with rare diseases are left behind by the start of a new decade. As part of…
Columnist Jerry Walter shares a comprehensive list of online resources to help educate patients and the public alike about Fabry disease.
Check out Fabry Disease News’ collection of Health Insights, where you can find a variety of information for patients and caregivers.
Find more answers to your questions about Fabry disease in our FAQs section.
Becoming educated and informed about Fabry disease 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 columnists’ words of wisdom to help you along on your Fabry disease journey.
There is no cure for Fabry disease yet, but there are treatments that can help manage the disease. Learn more about the approved and experimental therapies here.
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