International Angelman Day

International Angelman Day is observed annually on February 15. This global event raises awareness for Angelman syndrome, a rare neurogenetic disorder characterized by developmental delays, lack of speech, and a happy, excitable demeanor. The specific date was chosen because the syndrome is caused by a loss of function in a gene located on the 15th chromosome, and February is recognized internationally as Rare Disease Month. ¹

History of International Angelman Day

The foundation for this day began in 2012 when two parents of children with Angelman syndrome, Ursula Christel from New Zealand and Sarah Roarty from Ireland, recognized the need for a unified global voice. They reached out to 31 national Angelman organizations to propose a synchronized day of awareness. After a collective vote, the community established February 15 as the official date for the observance. The inaugural International Angelman Day took place in 2013, aiming to mobilize fundraising, promote research, and provide a sense of community for families who often felt isolated by the rarity of the diagnosis.

The namesake of the condition is Dr. Harry Angelman, an English pediatrician who first identified the syndrome in 1965. While vacationing in Italy, he observed a Renaissance painting titled “A Boy with a Puppet,” which reminded him of several patients who shared similar symptoms, including a jerky, puppet-like gait and frequent laughter. For decades, the condition was poorly understood and often misdiagnosed. The establishment of this international day has helped transform the narrative from a medical curiosity into a global movement supported by over 50 organizations across 40 countries.

Why is International Angelman Day important?

The observance is essential for driving research toward a cure for a condition that affects approximately one in 15,000 live births. Because many medical professionals rarely encounter Angelman syndrome, public awareness can lead to earlier and more accurate diagnoses. Early intervention is critical for managing symptoms such as seizures and sleep disturbances, which significantly impact the quality of life for both the individuals and their caregivers. The day also highlights the realistic prospect of genetic therapies currently in development.

Beyond the medical scope, the day serves as a powerful tribute to those living with the syndrome and a memorial for those who have passed away. It fosters an environment of inclusion by educating the public on how to support individuals who are nonverbal or have motor challenges. By sharing stories and data, the community encourages governments to invest in disability resources and educational support. This collective action reminds families that they are part of a massive, supportive network that spans the globe.

• It advocates for increased funding and participation in global research registries.
• The day honors the resilience and joyful spirit of individuals with the syndrome.
• It educates the public to reduce the stigma associated with nonverbal communication.
• The event provides a platform for families to share practical caregiving advice.
• It marks a time for international collaboration among rare disease scientists.

How to Celebrate International Angelman Day

The most visible way to celebrate is by participating in the “Light Up Blue” campaign, where families ask local authorities to illuminate landmarks, bridges, and buildings in blue. Many supporters wear blue clothing or accessories to spark conversations about the condition in their workplaces and schools. Sharing information on social media is a common practice, with families posting photos and educational infographics to reach a wider audience. Many organizations also host “Angelman Strong” walks or community picnics to bring families together in a supportive setting.

Practical acts of support often include fundraising for national organizations that provide grants for communication devices and medical equipment. Families may distribute flyers or children’s books that explain the syndrome to neighbors and classmates, fostering a more compassionate community. Signing up for the Global Angelman Syndrome Registry is another meaningful way to contribute, as the data collected helps researchers understand the disease’s trajectory and informs clinical trials. Small gestures, such as baking blue-themed treats or wearing blue ribbons, help ensure the day is both educational and festive.

• Wear blue apparel to show solidarity with the Angelman community.
• Request that a local building or landmark be lit in blue for the evening.
• Post educational facts about the 15th chromosome on social media platforms.
• Donate to a charity dedicated to funding Angelman syndrome research.
• Organize a blue-themed bake sale to raise money for patient support services.

International Angelman Day Dates Table

1. https://angelmanday.info/[↩]