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TANGO2 Deficiency Disorder is so rare that fewer than 150 cases have been reported worldwide, primarily in young children. The disorder, which results from a variation in the TANGO2 gene, can cause seizures that result in brain damage as well as life-threatening irregular heart rates. The disorder has proved fatal by age 9 in about half the children diagnosed.

Rare Disease Day is observed every year on 28 February (or 29 in leap years)—the rarest day of the year. Rare Disease Day was set up and is coordinated by EURORDIS and 65+ national alliance patient organization partners. It aims to raise awareness about rare diseases and the people they affect to address scientific challenges and advance research for new treatments. We recognize this day by kicking off our biggest campaign of the year – our virtual Shine a Light on TANGO2 fundraising event!

Our 4th annual Shine a Light on TANGO2 virtual fundraiser is well underway with a goal to raise $120,000 for critical research for TANGO2 disease. Fundraising goes until the end of June and participants are encouraged to sign up now and attend our kickoff on March 2nd at 10:00 AM on Zoom. You can RSVP and find more information by visiting our Facebook event page.

Visit to register as an individual or team. Once registered, you will have access to a personalized fundraising webpage to modify and share your reasons to support awareness and funding of TANGO2 research. Share your own unique fundraising link on social media platforms and emails to help raise funds, or use some of our fundraising ideas in our participant handbook to get creative and host your own local and community fundraisers.

Reaching our biggest goal yet of $120,000 will mean another round of research grants that will further our mission to help our children and young adults have the healthiest and brightest future possible. And we can only do it with your support.

Are you ready to shine a light on TANGO2 disease with us? Please go to: today to sign up or donate to one of our teams.