In 1999, B.O.S. was first described, but as is often the case with novel diseases and medical discoveries, the picture was not crystal clear. In 2011,
April 6 is celebrated annually as Bohring-Opitz Syndrome Awareness Day. It aims to disseminate information about the topic and assist parents and carers by fostering connections with those who can relate and are experiencing similar situations. Bohring-Opitz Syndrome (B.O.S.) is an exceedingly rare genetic disease, with fewer than 300 reported cases globally. Taylor Gurganus, vice-chair of the Bohring-Opitz Syndrome Foundation, established the day in 2015, with the date chosen as the anniversary of the first B.O.S. Support Group on Facebook.
In 1999, B.O.S. was first described, but as is often the case with novel diseases and medical discoveries, the picture was not crystal clear. In 2011, researchers discovered that more than half of the children they tested with a clinical diagnosis of B.O.S. had a mutation in a gene called ASXL1. This is the result of significant medical advancements and enhanced ability to search for genetic changes. This discovery enabled medical professionals to ascertain the disease’s cause and establish certain facts. B.O.S., for instance, is not a hereditary disease, so the likelihood of having multiple children with the condition is extremely rare.
The Bohring-Opitz Syndrome Foundation is a non-profit organisation that Carrie Hunsucker and Taylor Gurganus founded in 2015. Through the establishment of a medical advisory board, awareness initiatives, and parent/patient advocacy, the organisation seeks to enhance the lives of those affected by this illness. Through their numerous assistance programs, they have assisted innumerable families and increased the sense of community surrounding the disease. Working in tandem with the medical community, they also fund research that has increased our understanding of B.O.S. and its treatments.
Sünne van Gemert-Godbersen founded the first Bohring-Opitz Syndrome (B.O.S.) support group on April 6, 2011. Later, Gurganus, who is the vice-chair of the Bohring-Opitz Syndrome Foundation, created the Bohring-Opitz Syndrome Awareness Day in order to continue raising awareness and supporting the community.
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Genetic disorders are diseases induced by deviations from the normal DNA sequence.
Genetic disorders may result from a mutation in a single gene, multiple genes, a combination of gene mutations and environmental factors, or chromosomal disruption.
One in approximately 150 infants is born with a chromosome abnormality.
The United Nations estimates that between 3,000 and 5,000 children are born with Down syndrome each year.
Some treatments may delay the progression of the disease or mitigate its effects, but none can completely cure it.
| Year | Date | Day |
|---|---|---|
| 2023 | April 6 | Thursday |
| 2024 | April 6 | Saturday |
| 2025 | April 6 | Sunday |
| 2026 | April 6 | Monday |
| 2027 | April 6 | Tuesday |
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