Rare Disease Day Smile-A-Thon for PMD and PMLD
“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.”
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Created back in 2008, Rare Disease Day brings attention to the international rare disease community. Each year on the last day of February, the community comes together to share experiences and call on policymakers to shed light on rare diseases affecting over 300 million people worldwide.
Share your smile for Rare Diseases.
We’re holding a Smile-a-thon inspired by our PMD and PMLD kids – when they smile, it lights up the room. We want to share their light (and yours!) with the rest of the world to build awareness of PMD and PMLD for Rare Disease Day.
For our Smile-a-thon, we want PMD and PMLD families and all of our social media followers to share a photo or video of their smile. Use the #RareDiseaseDaySmile hashtag to be sure we see it! 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.
What makes a disease rare?
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 as approximately 1 in 100,000 in the USA.
Our families are well-versed in the frustrations inherent in rare diseases. While scientists and medical researchers work hard, there is a general lack of scientific knowledge and quality information for many diseases that can delay diagnosis.
That lack of information and awareness leads to a need for quality health care, placing heavy social and financial burdens on patients and families.
Our families also recognize the broad diversity of symptoms that lead to diverse experiences, even for those suffering from the same disease. This is true for PMD and PMLD and many other rare diseases experienced around the world.
#RareDiseaseDaySmile: A global story, a local impact
Rare Disease Day was set up and is coordinated by EURORDIS and 65+ national alliance patient organization partners. The international community will ‘Share Their Colors’ on February 28, 2022, providing a focal point that enables advocacy for rare diseases on multiple levels. We at the PMD Foundation have created our Smile-a-thon to share the love for our families.
And it’s already working! A long-time PMD Foundation supporter has promised to donate ten dollars for every smile we see on Rare Disease Day to a maximum of $500.
We will receive $10 for every smile shared on social media with the #RareDiseaseDaySmile hashtag!
Sharing your smile on Facebook? Tag us at @ThePmdFoundation and use #RareDiseaseDaySmile
Sharing your smile on Instagram? Tag us at @pmdfoundation and use #RareDiseaseDaySmile
Sharing your smile on Twitter? Tag us at @_pmdfoundation and use #RareDiseaseDaySmile
Would you like to make your own donation to support the PMD Foundation? Please make your donation here or reach out to us at contact@pmdfoundation.com to discuss matching dollars for smiles!