PMD Foundation’s Smile-A-Thon for Rare Disease Day 2022

Background:

“Rare Disease Day is the globally-coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease.” [source]

Created back 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.

According to the Rare Disease Day website, a disease is considered rare when it affects less than 1 in 2,000 people. While Pelizaeus-Merzbacher Disease’s prevalence in the general population is unknown, it is estimated at approximately 1 in 100,000 in the USA.

Affected families are well-versed in the frustrations inherent in rare diseases but the general public isn’t. Participating in Rare Disease Day provides an opportunity to create awareness around Pelizaeus-Merzbacher Disease (PMD) and Pelizaeus-Merzbacher-like disease (PMLD).

The Challenge:

How can we make this international event a personal experience for PMD and PMLD families and supporters? How do we use our 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 – when they smile, it lights up the room. We shared 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 and all of our social media followers to share a photo or video of their smile. 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.”

Participation

42

Families

9

Countries

144

Photos

Results

16,238

Impressions

254%

Increase in impressions

2,108

Increase in impressions

805%

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.

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.

Not only was this a successful campaign – it was the most successful campaign we have ever held to raise awareness for PMD during Rare Disease Day. We are very appreciative to the team at 29 Design Studio for identifying a strategy to elevate how we have done things in the past and to raise awareness for Pelizaeus Merzbacher Disease. PMD Foundation

About the Client

The PMD Foundation is family-driven and proactively serves those affected by Pelizaeus-Merzbacher Disease and Pelizaeus-Merzbacher-like disease (the PMD community) by supporting programs of education, research, service, and advocacy. The Foundation is dedicated to providing patients and their families with information about their disease and assistance in identifying sources of medical care, social service, and genetic counseling; establishing a communications network among families; increasing public awareness and acting as an information source for health care providers; and promoting research into causes, treatment, prevention and cure of PMD.  

Learn more: www.pmdfoundation.org

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