RareAction Network
Don’t see a Rare Disease Day event near you? Hosting an event? Please visit www.rarediseaseday.us to learn what other events are happening around the country or to submit your events
In honor of Rare Disease Month, we are proud to announce our February exhibition, featuring the work of Peter Sonenshein, a Philadelphia artist living with familial dysautonomia. On Thursday, February 1st, from 6-8pm, join us in celebration of Peter’s “VISIONS FROM BEHIND THE CURTAIN,” a body of work made, in part, behind the hospital curtain. […]
NORD Community Conversation: Building Awareness & Support Through Rare Disease Day Thursday, February 8, 2024 from 7:00pm-8:05pm ET In honor of Rare Disease Day on February 29, 2024, we invite you to join us for an engaging virtual discussion where community members will explore strategies to raise awareness for rare diseases and effectively advocate in […]
Friday, February 16, 2024 from 3:00 p.m. - 6:00 p.m. ACHE Research Institute Health and Wellness Center, 1000 Fianna Way, Fort Smith, AR 72916 Stripe Out Arkansas for Rare Disease Day 2024! Please join members of the rare disease community at this important event to discuss the challenges people living with rare diseases and disorders […]
Pennsylvania Virtual Rare Disease Day Friday, February 23, 2024 from 12:00 p.m. – 1:00 p.m. This is a virtual event. Please join patients, families, caregivers, medical professionals, and industry representatives at this important event to discuss the challenges rare disease patients face and learn how you can make a difference in the lives of rare […]
Thursday, February 29, 2024 from 9:00 a.m. - 1:00 p.m. MetroHealth Medical Center (Main Campus), 2500 MetroHealth Drive, Cleveland, OH 44109 The event will be held in Rammelkamp Atrium and The Alfred F. Connors, Jr., MD Learning Center- R170. Pre-event registration is now closed. We welcome you to register onsite on event day. Registration will […]
Friday, March 1, 2024, 4:30 PM - 8:00 PM Nationwide Children's Hospital Education Center, Columbus, OH Credits Non-Physician Attendance (5.00 hours), Community Program Attendance (5.00 hours), Non-Accredited (5.00 hours) Overview More than 300 million people in the world are affected by a rare disease. Rare is everywhere. As a Rare Disease Center of Excellence, Nationwide Children's is […]
Dine-in or take-out at Michael's Tap Room in Bethel, CT on Monday May 6th between 5pm-8pm and a portion of the proceeds will be donated to NORD! Reservations are encouraged. Location: Michaels Tap Toom, 37 Stony Hill Road, Bethel, CT 06801 Date/Time: Monday, May 6 from 5pm-8pm
Adrenal Insufficiency United invites you to a live Zoom event with Lauren Kopsick, Founder and Executive Director of The Healthcare Navigation Project. She will be presenting “The Five Principles of Self-Advocacy” where you’ll leave with actionable knowledge that you can use when advocating for your own mental or physical health and care. The event will be hosted […]
Join the California Rare Action Network for a Special Tea Brunch honoring rare moms on Saturday, May 11 from 10am-2pm. This event is free for mothers of children living with rare diseases. Please RSVP by May 5th; registration is required, click here to register. Location: Good Morning Maxwell, 90 Mission Drive #6, Pleasanton, CA 94566
NORD Community Conversation Empowered Parenting: Thriving as a Single Parent Raising a Rare Disease Child June 27, 2024 7:00 p.m. EST - 8:15 p.m. EST Virtual - Zoom Join us for an engaging discussion where community members can explore a comprehensive and supportive discussion. Hear from single rare parents about tools, resources, and information they […]
Adrenal Insufficiency United and Danny's Dose are working together to present a Family Fun and Emergency Preparedness Event that will take place on Saturday July 27th from 10am-1:30pm EST at Zoo Knoxville. Join us to learn about the importance of emergency treatment plans. Lunch and admission to the zoo after the event are included! Please […]
