KBG Syndrome Awareness Day
June 11
About KBG Syndrome Awareness Day
KBG Syndrome Awareness Day is observed annually on 11 June to raise global visibility for a rare genetic condition that affects thousands of families worldwide. Coordinated by the KBG Foundation, the day brings together affected individuals, families, medical professionals, and supporters to share information, build community, and fund research into a condition that remains poorly understood by many clinicians.
What is KBG Syndrome?
KBG syndrome is a rare genetic disorder caused by a change (variant) in the ANKRD11 gene on chromosome 16, or by a small deletion of genetic material from the region of chromosome 16 that includes that gene. The condition is inherited in an autosomal dominant pattern, meaning a single altered copy of the gene is sufficient to cause the disorder. When a parent carries the variant, each of their children has a 50% chance of inheriting it.
The name KBG comes from the surnames of the three families — Herrmann, Pallister, and Opitz — whose children were first described together in a landmark 1975 paper published by doctors who used the families’ initials to name the newly identified syndrome. The initials stand for the surnames of those pioneering families: K, B, and G.
The clinical features of KBG syndrome vary considerably from person to person, but the most consistently reported characteristic is macrodontia of the permanent upper incisors — unusually large front teeth — which is seen in 85 to 95 percent of those diagnosed. Other common features include characteristic facial differences (including a triangular face, prominent nasal bridge, and thin upper lip), short stature, delayed bone age, mild to moderate intellectual disability or developmental delay, skeletal differences (such as short fingers or scoliosis), hearing loss, and in some cases epilepsy. The level of intellectual disability is typically mild, and some individuals with KBG syndrome have normal intelligence.
Because its features overlap with other conditions and are often subtle, KBG syndrome is frequently misdiagnosed or diagnosed late. Wider clinical awareness is one of the primary goals of the annual awareness day.
When is KBG Syndrome Awareness Day?
KBG Syndrome Awareness Day falls on Thursday, 11 June 2026. The date is fixed to 11 June every year. The choice of that date is deliberate: “11” is a nod to the ANKRD11 gene, whose variants are responsible for most cases of the syndrome. The awareness day is part of a wider month of activity during June, which is also the home of TM (Transverse Myelitis) Awareness Day and other rare disease observances that bring much-needed attention to conditions affecting small but passionate communities.
Why KBG Syndrome Awareness Day Matters
KBG syndrome is classified as a rare disease, meaning it affects fewer than 1 in 2,000 people in the general population. Because it is so uncommon, many affected individuals and families wait years for an accurate diagnosis, navigating a system that may not recognise the condition’s presentation. Early diagnosis is important: it allows families to access appropriate support, educational provision, therapy, and medical monitoring for associated features such as hearing loss or cardiac differences.
Research into KBG syndrome is still at an early stage. The KBG Foundation runs a patient registry — a crucial tool for collecting data that can help researchers identify patterns, understand the full spectrum of the condition, and eventually develop targeted treatments. Awareness Day fundraising contributes directly to this research pipeline, as well as to family support networks that provide vital community connections for those living with the syndrome.
The broader rare disease community faces common challenges: limited research funding, small patient populations that make clinical trials difficult, and a frequent lack of specialist knowledge at the primary care level. Awareness days such as this one are not merely symbolic: they are part of the infrastructure of advocacy that keeps rare diseases on the medical and policy agenda.
How to Get Involved in KBG Syndrome Awareness Day
There are many ways to show your support, whether or not you have a personal connection to KBG syndrome:
- Wear KBG Syndrome colours – The KBG Foundation has awareness merchandise available. Wearing branded clothing or accessories on 11 June is a simple, visible way to start conversations and spread awareness in your community.
- Paint a KBG rock – The “KBG Rocks” initiative is one of the Foundation’s most beloved awareness activities. Supporters paint rocks in KBG colours and leave them in public places for others to find, creating a trail of awareness across neighbourhoods and towns.
- Share on social media – Use the hashtags #KBGSyndromeAwarenessDay and #KBGSyndrome2026 to share stories, facts, and supportive messages. If you are not personally affected, amplifying the voices of those who are is one of the most effective forms of advocacy.
- Learn about the ANKRD11 gene – Understanding the genetic basis of KBG syndrome helps demystify it. Share a fact about the condition with friends, family, or colleagues. Small acts of education accumulate into broader awareness.
- Donate to the KBG Foundation – The Foundation is volunteer-run and relies on donations to fund its patient registry, family network, and seed grants for research. Even a small donation on 11 June helps sustain this work.
- Contact your local representatives – The KBG Foundation encourages families to seek official proclamations from state or local governments recognising KBG Syndrome Awareness Day. This kind of formal recognition helps build institutional awareness.
- Register with the patient registry – If you or someone you care for has KBG syndrome, registering with the Foundation’s patient registry contributes directly to the research base and helps scientists understand the full scope of the condition.
History of KBG Syndrome Awareness Day
The origins of KBG Syndrome Awareness Day trace back to 2015, when two parents received a KBG syndrome diagnosis for their son. Within days of receiving that diagnosis, they had founded the KBG Foundation, determined to ensure that other families would have access to the information and support they had struggled to find. The following year, in 2016, the Foundation held the first KBG Syndrome Awareness Day, with 71 diagnosed families taking part in the inaugural event.
In the years since, the awareness day has grown considerably, reaching families and supporters across multiple countries. In 2020, the date was shifted from its original placement to 11 June, chosen as a hat-tip to the ANKRD11 gene, and also to avoid proximity to other significant commemorations in the calendar. The “KBG Rocks” creative initiative began as a grassroots idea within the community and has since become one of the day’s signature activities, with participants in multiple countries painting and distributing rocks on 11 June each year.
The KBG Foundation operates as an entirely volunteer-run organisation, which makes the scale of what it has built — patient registry, family network, research seed grants, and an international awareness day — all the more remarkable. The annual awareness day is the organisation’s most visible public moment, and the primary vehicle through which it reaches newly diagnosed families who may not yet know the community exists.
Noteworthy Facts About KBG Syndrome
- KBG syndrome was first described in medical literature in 1975, named using the initials of the surnames of the first three families studied.
- The condition is caused by variants in the ANKRD11 gene on chromosome 16q24.3 — and the date 11 June was chosen as an annual tribute to that gene.
- Macrodontia (unusually large upper front teeth) is the most consistently reported clinical feature, present in 85 to 95 percent of diagnosed individuals.
- The condition is inherited in an autosomal dominant pattern, meaning one altered gene copy is sufficient to cause the syndrome.
- The KBG Foundation’s first awareness day in 2016 brought together 71 families — a figure that has grown substantially in subsequent years as diagnostic rates have improved.
- In addition to intellectual disability and developmental delay, KBG syndrome can involve epilepsy, hearing loss, heart differences, and skeletal variations — making it a genuinely multisystem condition requiring coordinated care.
Frequently Asked Questions
What is KBG Syndrome?
KBG syndrome is a rare genetic disorder caused by variants in the ANKRD11 gene or a deletion on chromosome 16. It is characterised by large upper front teeth (macrodontia), distinctive facial features, short stature, and mild to moderate developmental delay. It is named after the initials of the first three families studied when the condition was identified in 1975.
When is KBG Syndrome Awareness Day in 2026?
KBG Syndrome Awareness Day falls on Thursday, 11 June 2026. The date is fixed to 11 June each year as a nod to the ANKRD11 gene responsible for the condition.
Who organises KBG Syndrome Awareness Day?
The day is organised by the KBG Foundation, a volunteer-run non-profit established in 2015 by parents of a child diagnosed with KBG syndrome. The Foundation runs a patient registry, provides family support networks, and funds seed grants for research into the condition.
Spread the Word
Help raise awareness of KBG syndrome by sharing information with your network on 11 June. Use the hashtags #KBGSyndromeAwarenessDay and #KBGSyndrome2026 on social media. For families receiving a new diagnosis, knowing that a community and an awareness day exist can make an enormous difference. The more people who know about KBG syndrome, the better the chance of early, accurate diagnosis for those who need it.
Related Awareness Days
- World Sanfilippo Awareness Day – Observed on 16 November, this day raises awareness of another rare genetic neurological condition affecting children, with a similar focus on community-driven research advocacy.
- TM (Transverse Myelitis) Awareness Day – Marked on 9 June, just days before KBG Syndrome Awareness Day, this observance highlights another rare neurological condition that affects a small but vocal patient community.
- National D.R.E.S.S. Syndrome Day – Observed on 16 July, this day raises awareness of Drug Reaction with Eosinophilia and Systemic Symptoms, a rare and potentially serious condition that similarly benefits from wider clinical recognition.
Links
- Visit the official KBG Syndrome Awareness Day page (KBG Foundation)
- Explore more awareness days at AwarenessDays.com
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