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PMD Foundation’s Smile-A-Thon for Rare Disease Day 2022
The PMD Foundation proactively serves those affected by Pelizaeus-Merzbacher Disease and Pelizaeus-Merzbacher-Like Disease. The foundation is dedicated to providing patients and their families with information about their disease, increasing public awareness, and acting as an information source for healthcare providers, and promoting the research of PMD. While Pelizaeus-Merzbacher Disease’s prevalence in the general population is unknown, it is estimated at approximately 1 in 100,000 in the USA.
Created in 2008, Rare Disease Day brings attention to the international rare disease community. Each year on the last day of February, the Rare Disease Community comes together to share experiences and call on policymakers to shed light on rare diseases affecting over 300 million people worldwide.
Participating in Rare Disease Day provided an opportunity to create awareness around Pelizaeus-Merzbacher Disease (PMD) and Pelizaeus-Merzbacher-like disease (PMLD).
The Challenge
How could we make this international event a personal experience for PMD and PMLD families and supporters? And how could we use PMD family’s personal experiences to create global awareness around these diseases?
Our call to action for the PMD/PMLD Community: Share your smile for Rare Diseases.
We held a Smile-A-Thon inspired by the PMD and PMLD kids, sharing their light with the rest of the world to build awareness of PMD and PMLD for Rare Disease Day.
For the Smile-A-Thon, we asked PMD and PMLD families to share a photo or video of their smiles. We asked them to tag the PMD Foundation and use the #RareDiseaseDaySmile hashtag to be sure we saw their post.
“You’ll be helping us celebrate the PMD and PMLD Warriors in our communities, remembering those who have brought so much joy to our lives, and shining a bright light on this rare disease.”
How We Did It
First, we set expectations for our audience. We created a blog post for the PMD Foundation’s website and shared it in the Foundation’s email newsletter.
We began teasing the event on social media, calling for our families and supporters to share their best smiles with us.
We created an easy hashtag for our audience to use and follow: #RareDiseaseDaySmile. We also tagged the folks behind the international Rare Disease Day activities, using their hashtag as well, to amplify our message.
When the day arrived, we blew up Instagram, Twitter, LinkedIn, and Facebook! We used a frame to add PMD Foundation and Rare Disease Day branding while keeping smiles the central focus. We shared, reshared, and retweeted 144 photos submitted by PMD Foundation supporters.
Participation
Families
Countries
Photos
The Results
Impressions
Increase in impressions
Engagements
Increase in engagement
PLUS creating awareness of Rare Disease Day and our Smile-A-Thon attracted donors. One donor made a donation to the PMD Foundation in support of the event.
Immediate results
12 days into our launch CHOP has had 45 families complete the online referral that is a huge number for us. Thanks in large part to our marketing strategy. Thank you! Dave Manley, Board Chair, PMD Foundation Natural History Study Campaign