Rare Disease Day, which is recognized each year on the last day of February, is probably the biggest day for rare disease patient advocacy annually. There are always a wealth of webinars, research presentations, documentary screenings, and other events that aim to spread awareness and support. One of the leading rare disease organizations in the National Organization for Rare Disorders (NORD). To learn more about NORD’s plans for Rare Disease Day, we sat down with Lisa Sarfaty, the organization’s Vice President for Community Engagement.
Lisa, Patient Worthy is so impressed with the great gathering of events all over the nation, from Peeper Pypers Party in Phoenix to the ROHHAD Consortium, both ultra- rare conditions, to the ever-wonderful Rare Disease Day at NIH. Do you have any suggestions for people who want to “do it all?”
NORD is so thrilled at the level of excitement and engagement around Rare Disease Day across the country and across the globe. We really understand and sympathize with trying to do it all – NORD is in the same boat! Rare Disease Day and celebrating the importance of our rare family need not be restricted to February 28th. We recommend picking an activity that you can start now or on Rare Disease Day and then carry out your ideas throughout the year to keep momentum and awareness going. For those who don’t know where to start, we suggest these Rare Disease Day activities:
- Post on social media with your story and the importance of Rare Disease Day. Use #RareDiseaseDay and #ShowYourStripes and tag NORD – we love to uplift our community voices!
- Join NORD live on February 28th at 1:30pm EST to celebrate the 12th annual Rare Disease Day. During the virtual event, you will have the opportunity to submit a photo, piece of artwork, or message sharing why you #ShowYourStripes. Your message of support will appear online during the live-streamed event. Don’t forget to wear stripes!
- #LightUpForRare! NORD is excited to help drive a global chain of lights, illuminating buildings in Rare Disease Day colors, to raise awareness for those living with a rare disease. You can participate from your home office or call on your community to light up landmarks or buildings. Here’s more information on how to #LightUpforRare.
NORD’s Share Your Story portal is always open and we are eager to continue to share the voices and perspectives of individuals and families and their rare journeys. You can also visit the Rare Disease Day website to explore events – virtual and in-person – across the United States throughout February and March that you can attend or engage with further.
Light up for rare promises to be spectacular. Are there any plans to video all these events so that participants can travel virtually?
Each Rare Disease Day, monuments and buildings of note have sent messages of solidarity by lighting up with the pink, blue, and green colors of Rare Disease Day. Our goal is to shine a light, provide hope for millions worldwide, and help our fellow global citizens learn about and acknowledge the challenges of living with a rare disease. NORD plans to share images and videos across social media (#LightUpForRare) so the world can see and show support!
NORD is obviously showing the love on Valentine’s Day by selecting a number of registrants to receive a package of rare disease swag, but for those who will be constructing our own zebra themes at home, and 85% of rare patients being children, do you have any crafty hints?
You don’t have to look far! NORD has created a variety of activities and crafts that both adults and kids will enjoy. Visit NORD’s website to download printable photo props, stickers, swag, trivia, crossword puzzles, coloring pages, educational curriculum, and materials for all grade levels.
It is wonderful that NORD’s own event is just one hour long. We would like to urge all our rare disease families to spend their lunch hour with you! Will working people be able to join on their phone or tablet?
Yes, NORD’s virtual event, taking place on February 28 from 1:30 – 2:30pm ET is accessible to all, from a computer, phone, or tablet. The event, “Showing You Stripes with NORD,” will be a global celebration of Rare Disease Day and our rare community, featuring incredible patient stories and surprise celebrity appearances. Invite your friends, family, and network of advocates to join in the celebration and RSVP today!
There are millions of rare families all over the world, and NORD’s timing will allow many to join, but will the program also be available for later viewing?
Thanks for asking, yes, the event will be available for later viewing for any interested parties! NORD is committed to the equity and accessibility of our resources and gatherings, and we will make sure the full event is available online as soon as possible.
What advice would you give our readers to make the most out of Rare Disease Day?
Make the day yours! The rare community is so unique, diverse, and strong, so there are many ways to engage and celebrate with others. Make a plan before February 28th on how you want to spend the day, share your story, give back, or learn from experts when attending events. Take the time to read the stories of your rare family members.
But above all else – don’t let the momentum end after Rare Disease Day. It will take all of us, consistently raising our voices, to drive successful outcomes and innovation, find treatments and cures, and help all current and future rare patients live their best and most fulfilling lives.
What calls to action is NORD putting forth so that the momentum of this day leads to faster treatment and cures?
Spread the word on social media and raise awareness in your networks!
Contact your local media or state/local government to ensure your community is aware and ready to engage. NORD has resources to help you spread the word to the media, request an official proclamation recognizing Rare Disease Day in your state or town, and more!
There are so many ways to support the over 25 million Americans affected by rare diseases, one of which is through direct donations to NORD. With any and every individual donation, NORD is supporting patients and organizations, accelerating research, providing education, disseminating information, raising awareness, and driving public policy. Donating even $1 or $2 this Rare Disease Day will go a long way to help members of our herd live their best rare lives.
