Tag: CADASIL

A total of 9 posts are filed under CADASIL
Recap: cureCADASIL Registry Rally and Get-Together in Colorado
Organization: cureCADASIL Association Submitted by: Janet Mills On Saturday, June 4, 2016, nineteen people from the CADASIL community came… Continue Reading
Rare Disease During the Holidays: How Much Can You Handle?
by Janet Mills My first Christmas season knowing I had CADASIL (a rare genetic neurological disease with no treatment) was bittersweet.… Continue Reading
Hope for CADASIL Presents Second International Workshop
It was in 1993 that Professors Marie Germaine Bousser and Elisabeth Tournier-Lasserve first identified a new disease, CADASIL, after an… Continue Reading
What I Hope to Get From Attending the Global Genes Rare Patient Advocacy Summit
By Janet Mills As I count down the days before I leave Wyoming to attend the Global Genes Patient Advocacy Summit and Champions of Hope Gala… Continue Reading
Rare Disease and Summer Heat? Not a Good Combo. Check Out These Hot Tips!
By Janet Mills It’s summertime and the living is…sometimes difficult. It can be so terribly hot. Not just the hot we expect during the… Continue Reading
Rare Friendships: How Your Friends Can Help You
By Janet Mills Telling long-time friends about my diagnosis of CADASIL (Cerebral Autosomal Dominant Arteriopathy with Subcortical Infarcts… Continue Reading
The Stigma of Rare Disease: How Do You Tell People About Your Condition?
Many rare diseases, like my own, have hard-to-pronounce names that evoke fear or boredom from people first hearing them. In my experience,… Continue Reading
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