Rare AND Powerful: Global Kabuki Syndrome Community Advocates on Rare Disease Day

Every year on the last day of February, advocacy groups around the world recognize Rare Disease Day – a global movement to raise awareness for the 300 million people living with rare diseases like Kabuki syndrome. Rare Disease Day has become a powerful platform of change that encourages policy updates and improved healthcare for people impacted by rare disease. For the Kabuki syndrome community, this day is an opportunity to unite and amplify our voices. Together, we can turn awareness into action and hope into treatments. 

Share Your #rareAND to Join the Movement

This Rare Disease Day, we invite you to participate in a powerful advocacy and awareness campaign for Kabuki syndrome. Individuals and families impacted by Kabuki syndrome face daily physical and mental challenges, countless therapy appointments, and ongoing medical complications. At times, it may feel like the syndrome dominates their lives – but it does NOT define them. Amidst the challenges, they also experience moments of joy, resilience, and triumph. People with Kabuki syndrome are determined and strong! They love music! They teach us so much about love and laughter. Each person with Kabuki syndrome is unique and forging their own path. People with Kabuki syndrome are rare AND so much more.

Sharing your story increases awareness of Kabuki syndrome, driving more support, advancing research, and paving the way for better healthcare and treatment options. Every story shared and every voice raised contributes to our momentum.

Here’s how you can participate in Rare Disease Day for Kabuki syndrome: 

• Download or screenshot one of the photo templates – more options here. 
• Use Instagram or a free app like Canva to add a photo of yourself/your child and the language below to craft a Rare Disease Day caption.
• Post your photo on social media using #rareAND on Friday, February 28. Tag us @kabukisyndrome on Instagram or Facebook and use #RareDiseaseDay to reach even more people!

More Templates For You

To add your picture to a frame like the one above, take a zoomed in screenshot or download a template from this file.

Then, use Instagram or a free app like Canva or PicCollage to add your photo. Here’s a 10 second tutorial video. (Your screen may look slightly different if you have an updated version of Instagram.) 

Need support adding your photo? We can help! Please contact us by 5 pm EST on Thursday, February 27th so our staff can help you before Rare Disease Day.

Write Your Caption and Start the Conversation

You can customize the language below for your social media caption, and you can also use it to start in-person conversations on Rare Disease Day:

In honor of Rare Disease Day, I want to introduce my [granddaughter, name]. She is #rareAND JOYFUL. [Name] has a rare disease called Kabuki syndrome, and while her brain, muscles, immune system, and more will be impacted her whole life SHE IS ALSO FULL OF JOY! Her laughter lights up the room, and her jokes are so witty.

But she has had more medical procedures than most adults. There are no treatments for Kabuki syndrome – yet. The Kabuki Syndrome Foundation is supporting research to investigate nine potential treatments that could one day change [name]’s life. I invite you to learn more about their mission on this special day. The more people who see and engage with our message, the more awareness and support we can generate for life-changing treatments for Kabuki syndrome. Let’s make Rare Disease Day count for [name] who shows me every day that she is #rareAND joyful!

The more eyes on this rare disease, the more advocates we can inspire to help change the lives of people with Kabuki syndrome. We look forward to seeing your #rareAND photos and stories on Rare Disease Day!