Sällsynta dagen – vad är det?Vad innebär det att leva med ett sällsynt hälsotillstånd?Varför är det viktigt att få en orsaksdiagnos?Hur har 2020 års nobelpris för gensaxen CRISPR-Cas9 möjliggjort genterapi för svårt sjuka personer?Var kan man finna information och stöd när man möter en person med en sällsynt diagnos?Den sista februari varje år, i år Read more >
Find out more »Submit Your Zebra Artwork by Feb. 23, 2022! This year for Rare Disease Day on Feb. 28th 2022, the FD Foundation would like to showcase your zebra artwork on our social media platforms, to raise awareness and generate positive action for the rare disease community. The #ShowYourStripes campaign takes its cue from the majestic zebra, Read more >
Find out more »Show that you DO care for rare, and celebrate Rare Disease Month with SRNA! Challenge yourself to go further by participating in our Rare Do Care Virtual Walk-Run-N-Roll. Between now and February 28, log your miles as you walk, run, or roll in your neighborhood. Invite your friends and family to join, no matter where Read more >
Find out more »On Friday, February 4, 2022 at 12:00pm EST join MitoAction and Dr. Mark Korson of VMP Genetics as he discusses sick days, navigating the ER as a patient, and the importance/challenges of protocol letters within the mitochondrial disease community.
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