Keeping the Fabry community informed
Jerry's Fabry Disease Blog was created to spread awareness about Fabry disease, a rare genetic disorder, and to share news and information about what is happening in the Fabry community. The blog is one component of the National Fabry Disease Foundation's social networking program.
"Carrier" and "Rare" – words with a sharp point among families with Fabry disease While attending a large Fabry family conference recently, some of the discussions we had were about the term "carriers" to describe females with Fabry disease and about Fabry disease being classified as a "rare" disease. Both discussions sparked strong emotions and comments about the use of these words to describe some aspects of Fabry disease. These are not new issues in our community or new reactions to the use of these words. The past experiences of many females left an deep emotional scar.