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 »We are hosting a Chipotle fundraiser to raise money for NORD in honor of Rare Disease Day 2022, which is observed on Feb 28th. If you'd like to support rare diseases, come to the George Street Chipotle (387 George St, New Brunswick, NJ 08901) on 2/28 at 5-9 pm for dinner. 33% of the proceeds Read more >
Find out more »The National Organization for Rare Disorders (NORD®), in collaboration with the Rare Disease Diversity Coalition (RDDC), is pleased to announce the second webinar in a three-part series on health equity and rare disorders. This webinar will focus on the role health care providers and health systems play in promoting diversity, equity and inclusion (DEI) in healthcare settings. Read more >
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