#LightUpForRare on Rare Disease Day for PMD and PMLD
Each year on the last day of February, the Rare Disease Community comes together for Rare Disease Day. This year, on February 28, 2023, the international community will share its colors to promote awareness, share stories, and shed light on the rare diseases affecting over 300 million people worldwide.
Share Your Colors for Rare Diseases.
We’re participating in a Global Chain of Lights that connects the entire Rare Disease Community. We want to #LightUpForRare along with the rest of the world to build awareness of Pelizaeus-Merzbacher (PMD) and Pelizaeus-Merzbacher-Like Disease (PMLD) for Rare Disease Day.
To connect to the Global Chain of Lights, we are asking our families and supporters to light up their homes, offices, and communities to show their support.
Whether you garland yourself with twinkling lights, shine a colored spotlight on your home, or simply update social media using a filter or frame, your support is appreciated! Share photos of your colorful creations, tag us, and use the #RareDiseaseDay and #LightUpForRare hashtags to be sure we see it! Helpful resources for lighting up homes, buildings, and spreading the word on social media can be found at the bottom of this blog.
By honoring this day, 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 at approximately 1 in 100,000 in the USA.
PMD and PMLD 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, which places 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.
Share on Social Media with the #LightUpForRare Hashtag!
Sharing your colors on Facebook? Tag us at @ThePmdFoundation and use #LightUpForRare and #RareDiseaseDay
Sharing your colors on Instagram? Tag us at @pmdfoundation and use #LightUpForRare and #RareDiseaseDay
Sharing your colors on Twitter? Tag us at @_pmdfoundation and use #LightUpForRare and #RareDiseaseDay
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 for more information.
Helpful Resources for Rare Disease Day
Start by getting involved.
Learn how to illuminate a building or monument near you.
Download the #LightUpForRare video.
Use these social media filters, frames, and more.