Events for February 28, 2022

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 >

Magnolia Wang, a Biology Major and University Scholar at the University of Pennsylvania, has conducted in-depth research on the STAC3 gene and its associated genetic disorder, Native American Myopathy (NAM), and seeks to raise awareness of the rare disease and advocate for comprehensive genetic testing and research. NAM is a putative autosomal recessive disorder of Read more >

My daughter, Kobi Isabella Painting, petitioned Southeastern Louisiana University to light up the University Center with the RARE colors Sunday, February 27, and Monday, February 28th. The university did it! Her two older sisters have CTX, and she wants to bring awareness about the disease. She’s also competing in the Miss Louisiana contest in June Read 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 >

In honor of Rare Disease Day, Connecticut Children’s, JAX and UConn Health jointly present a virtual forum for Connecticut rare disease patients, advocates, and policymakers. Please join us via Zoom to hear directly from those living with rare disorders, learn from cutting-edge physician researchers who are committed to identifying treatments and cures, and for information Read more >

Rare Disease Day® takes place worldwide, typically on or near the last day of February each year, to raise awareness among policymakers and the public about rare diseases and their impact on patients’ lives. Each year, NCATS and the NIH Clinical Center sponsor Rare Disease Day at NIH as part of this global observance. Rare Disease Day at Read more >

Magnolia Wang, a Biology Major and University Scholar at the University of Pennsylvania, has conducted in-depth research on the STAC3 gene and its associated genetic disorder, Native American Myopathy (NAM), and seeks to raise awareness of the rare disease and advocate for comprehensive genetic testing and research. NAM is a putative autosomal recessive disorder of Read more >

REGISTER TODAY FOR THE WEBCAST! Rocket Pharma Celebrates Rare Disease Day 2022 START DATE: 2/28/2022 START TIME: 1:00 PM EST DURATION: 240 MINUTES ABSTRACT: Our mission is to seek gene therapy cures for people living with rare diseases, who are our North Star. We invite you to our annual celebration of Rare Disease Day at Read more >

SHOW YOUR STRIPES WITH NORD! Grab your favorite zebra print shirt or toss on a striped scarf and meet us online for a community gathering marking the 12th annual Rare Disease Day! This one hour event will be packed with entertainment from a star-studded guest lineup and offer a place to connect and chat with Read more >

Join us for a discussion about phenylketonuria with Jerry Vockley, MD, PhD, and Jane Breck, MD, who has studied PKU and treated patients with the condition for decades. A question-and-answer session will take place at the end of the hour. Registration is free. Registration link: https://attendee.gotowebinar.com/register/4975728142246791438