What is KBG Syndrome Awareness Day?

KBG Syndrome Awareness Day is held every year on June 11 and is observed globally. The day is dedicated to raising awareness about KBG syndrome, a rare genetic condition caused by mutations in the ANKRD11 gene. The syndrome affects development, learning, and physical characteristics. The goal of the day is to increase public understanding, support families living with the condition, and promote scientific research.

Though it is considered rare, the impact on individuals and families can be significant. Awareness is essential for early diagnosis, access to therapies, and building inclusive support networks. KBG Syndrome Awareness Day gives visibility to a condition many people have never heard of, and encourages a deeper sense of community for those affected.

History and Origin

KBG Syndrome Awareness Day was first marked by families who had received a diagnosis and wanted to connect. In the early years, the date shifted slightly as the community grew. Eventually, June 11 was chosen because it links symbolically to the ANKRD11 gene. The event has since grown into a coordinated global day of recognition supported by advocacy groups, researchers, and caregivers.

The day was initiated by the KBG Foundation and other advocacy partners, who worked to provide resources, create platforms for connection, and push for more attention to rare disorders. What began as a small movement now involves people from dozens of countries and receives increasing attention every year.

Who participates in KBG Syndrome Awareness Day?

• Families and Individuals with KBG: Share experiences and create visibility through stories and campaigns.
• Medical Experts and Therapists: Raise awareness through educational events, webinars, and support initiatives.
• Advocacy Groups: Organize events, online campaigns, and fundraising efforts to support research and resources.
• Supportive Communities: Engage in local activities, lighting buildings, or wearing symbolic colors.
• Schools and Workplaces: Share information or organize small events to highlight rare conditions like KBG.

Slogans and Themes

The day often uses messages that focus on strength, awareness, and unity. Common slogans include “Shining a Light on KBG Syndrome,” “Support Rare, Support KBG,” and “Together We Are Stronger.” Each year carries a slightly different theme, but all reflect the shared goal of building visibility, acceptance, and action.

Colors, Symbols and Patterns

Colors:

• Blue: Represents trust and support, often used in banners and graphics.
• White: Used to symbolize hope and understanding.
• Silver: Chosen to reflect the rarity and uniqueness of the condition.

Symbols:

• Awareness Ribbon: A custom ribbon style used for KBG campaigns and logos.
• DNA Helix: Represents the genetic foundation of the syndrome and the need for research.
• Butterfly: Often used as a symbol of transformation and resilience.

Patterns:

• Mosaic Designs: Reflect the variety of experiences and challenges within the KBG community.
• Gene Strand Patterns: Visually connect the condition to its genetic origins.
• Interconnected Circles: Used in visual materials to represent unity, support, and community links.

Most Used Hashtags

• #KBGawareness
• #KBGsyndrome
• #SupportKBG
• #RareButStrong
• #KBGcommunity

How do you celebrate KBG Syndrome Awareness Day?

• Wear Blue or Silver: Show support by choosing symbolic colors for clothing, accessories, or digital posts.
• Share a Personal Story: Use blogs, videos, or social media to speak about living with KBG syndrome.
• Organize a Community Event: Host an awareness walk, online fundraiser, or classroom presentation.
• Educate Locally: Distribute fact sheets to local schools, doctors, or libraries.
• Light a Landmark: Ask local buildings to use blue or silver lights to mark the day and raise visibility.

Why is KBG Syndrome Awareness Day important?

Raising awareness is essential for rare conditions like KBG syndrome. Many families go years without a diagnosis. Others struggle with limited access to resources and understanding. This day gives them a voice. It brings visibility, creates a sense of belonging, and pushes forward research.

With greater awareness, more families find answers. More doctors recognize symptoms. More children get support at school. KBG Syndrome Awareness Day empowers a growing community and invites the world to stand with them.