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Bohring-Opitz Syndrome Day 2024: Date, History, Significance and Facts

April 6 is celebrated annually as Bohring-Opitz Syndrome Awareness Day. It aims to provide information about the topic and assist parents and carers by fostering connections with individuals who can relate and are experiencing similar situations.

By Desk
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BOHRING-OPITZ SYNDROME DAY

Bohring-Opitz Syndrome Day 2024: April 6 is celebrated annually as Bohring-Opitz Syndrome Awareness Day. It aims to provide information about the topic and assist parents and carers by fostering connections with individuals who can relate and are experiencing similar situations. Bohring-Opitz Syndrome (B.O.S.) is an extremely rare hereditary condition, with fewer than 300 reported instances 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.

HISTORY OF BOHRING-OPITZ SYNDROME DAY

In 1999, B.O.S. was initially characterised, but as is often the case with new diseases and medical discoveries, the picture was not crystal clear. In 2011, researchers discovered that more than half of the children they examined 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 better ability to search for genetic abnormalities. This revelation enabled medical specialists to ascertain the disease’s aetiology and establish certain facts. B.O.S., for instance, is not a hereditary disease, thus the likelihood of having multiple children with the disorder is quite low.

The Bohring-Opitz Syndrome Foundation is a non-profit organisation that Carrie Hunsucker and Taylor Gurganus founded in 2015. With the development of a medical advisory board, awareness programmes, and parent/patient advocacy, the group seeks to enhance the lives of those impacted by this illness. Through their numerous support initiatives, they have assisted countless families and created the sense of community surrounding the condition. Working in tandem with the medical community, they also fund research that has advanced 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 helping the community.

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HOW TO OBSERVE BOHRING-OPITZ SYNDROME DAY

Wear denim and gold

Gold and denim are the awareness colours for B.O.S. Gold because the majority of affected youngsters are attracted to shining objects, and denim because it signifies unusual disorders. You can also express support by donning a B.O.S. ribbon.

Visit paediatric hospitals

Distribute pamphlets on Bohring-Opitz syndrome. Spread the word about the situation and the available resources.

Participate in a B.O.S. event.

Join the Facebook event for Bohring-Opitz Syndrome Awareness Day. You can also participate on social media by sharing posts and inviting others to join.

5 FACTS ABOUT GENETIC DISORDERS

The answer lies in our Genetics

Genetic disorders are diseases caused by deviations from the normal DNA sequence.

Many variations can trigger them

Genetic illnesses may result from a mutation in a single gene, numerous genes, a combination of gene mutations and environmental factors, or chromosomal disruption.

They are pretty typical

One in approximately 150 infants is born with a chromosomal abnormality.

Down Syndrome is the most prevalent disorder

The United Nations estimates that between 3,000 and 5,000 children are born with Down syndrome each year.

The majority of hereditary illnesses are incurable.

Several treatments may reduce the growth of the disease or mitigate its effects, but none can completely cure it.

WHY BOHRING-OPITZ SYNDROME DAY IS IMPORTANT

It raises consciousness

Bohring-Opitz Syndrome is an uncommon and lesser-known condition. This day brings it to the forefront.

It results in increased research and support

Bohring-Opitz Syndrome Awareness Day has helped advance research. Also, it has increased support for the cause.

It has connected households.

This day has brought together families who are also coping with this condition. It fosters community.

BOHRING-OPITZ SYNDROME DAY DATES

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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