People with Boring-Opitz syndrome day

April 6, Sunday

People with Boring-Opitz syndrome day
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International Boring-Opitz Syndrome Awareness Day is celebrated annually on April 6. This day is dedicated to raising awareness of a rare genetic disorder known as Boring-Opitz Syndrome.

What is Boring-Opitz Syndrome
Boring-Opitz Syndrome is an extremely rare genetic condition associated with a mutation in the ASXL1 gene. It affects child development and presents with a range of physical and neurological features. Only a few hundred diagnosed cases are known worldwide.

Goals and significance of the day
The main objectives of this day are to:

* draw public attention to the rare disorder
* spread accurate information about the syndrome
* support families raising children with BOS
* encourage medical research

Why April 6
The date was chosen to commemorate the creation of the first international online community for families affected by Boring-Opitz Syndrome, which was an important step toward unity and mutual support.

What happens on this day
On this day, the following activities take place:

* informational and educational campaigns
* meetings and online events for families
* publications in media and social networks
* initiatives supporting inclusion and respect for people with rare disorders

Symbols and colors of the day
Commonly used:

* denim color as a symbol of rare diseases
* gold as a sign of the value and uniqueness of every person

Why it is important
This day reminds us that:

* people with BOS and their loved ones need ongoing medical and social support
* early diagnosis can improve quality of life
* awareness helps reduce family isolation and foster inclusion

How to support
Everyone can contribute:

* learn more about the syndrome and share information
* support charitable initiatives
* show attention and empathy to families
* participate in activities on April 6

International Boring-Opitz Syndrome Awareness Day helps make rare diseases more visible and reminds us of the value of every person and the importance of support and understanding.
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People with Boring-Opitz syndrome day in other years

People with Boring-Opitz syndrome day in other countries

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