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 »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 »In honor of their daughter Pyper, the Stillman Family is hosting the first annual Peeper Pyper’s Party on February 27 to raise awareness for Familial Dysautonomia (FD), a rare disease and funds for the Familial Dysautonomia Foundation. Pyper was born with Familial Dysautonomia (FD). that affects the autonomic and sensory nervous systems, which controls voluntary Read more >
Find out more »Rare Disease Day Bay Area is a 2 Day Livestreamed Event on Saturday 2/26 and Sunday 2/27, that is held every year in the Bay Area. This free event will feature over 25 DJs from around the globe, performances, short films, rare disease guest speakers, live cooking demos, assistive yoga, Physical Therapy exercises, live auction Read more >
Find out more »The Zebra 5K Run/Walk is an in person or virtual 5K run OR walk! Why a Zebra? The Zebra is the official symbol of rare diseases in the United States... currently over 7,000 unique diseases! WHO WE HELP: The Zebra 5k Run/Walk benefits the greater rare disease community. There are nearly 7,000 diseases considered "rare," Read more >
Find out more »New York Rare Disease Day Virtual Event Sunday, February 27, 2022 6:00 pm – 7:30 pm EST Please join patients, families, caregivers, and other rare disease advocates as we raise awareness and celebrate the rare disease community in New York. Our goal is to educate the general public on the challenges faced by rare disease Read more >
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