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Get ready to raise awareness and support for those affected by Bohring-Opitz Syndrome on April 6, also known as BOS Day! This rare genetic disorder was first described in the late 1970s and affects less than 200 individuals worldwide. Despite its rarity, BOS Day serves as an important reminder to show love and acceptance towards those with this condition, and to support ongoing research and resources for families. So let's come together on this day to spread positivity and celebrate the strength and resilience of those living with BOS!
<div class='timeline-item'><div class='timeline-left'><div class='timeline-date-text'>1969</div></div><div class='timeline-center'></div><div class='timeline-right'><div class='timeline-text timeline-text-title'>First Case Reported</div><div class='timeline-text'>The first patient with symptoms, later identified as Bohring-Opitz Syndrome, was reported.</div></div></div><div class='timeline-item'><div class='timeline-left'><div class='timeline-date-text'>1977</div></div><div class='timeline-center'></div><div class='timeline-right'><div class='timeline-text timeline-text-title'>BOS Identified</div><div class='timeline-text'>Bohring-Opitz Syndrome was formally described and named by Axel Bohring.</div></div></div><div class='timeline-item'><div class='timeline-left'><div class='timeline-date-text'>2011</div></div><div class='timeline-center'></div><div class='timeline-right'><div class='timeline-text timeline-text-title'>ASXL1 Mutation Discovered</div><div class='timeline-text'>The ASXL1 gene mutation causing Bohring-Opitz Syndrome was discovered.</div></div></div><div class='timeline-item'><div class='timeline-left'><div class='timeline-date-text'>2015</div></div><div class='timeline-center'></div><div class='timeline-right'><div class='timeline-text timeline-text-title'>First BOS Day</div><div class='timeline-text'>The first Bohring-Opitz Syndrome Awareness Day was celebrated on April 6.</div></div></div><div class='timeline-item'><div class='timeline-left'><div class='timeline-date-text'>2020</div></div><div class='timeline-center'></div><div class='timeline-right'><div class='timeline-text timeline-text-title'>Expanded Scientific Research</div><div class='timeline-text'>New global initiatives expanded research into treatment options and potential cures for BOS.</div></div></div>
<div id='' class='facts-item'><div id='' class='facts-header'><h3 id='' class='facts-number'>1</h3></div><div id='' class='facts-text-wrapper'><h3 id='' class='facts-title'>Organize a fundraising event</h3><p id='' class='facts-text'>Host a charity run, walk, or bike ride to raise money for organizations that support those with Bohring-Opitz Syndrome. This is a great way to celebrate the day while also making a positive impact.</p></div></div><div id='' class='facts-item'><div id='' class='facts-header'><h3 id='' class='facts-number'>2</h3></div><div id='' class='facts-text-wrapper'><h3 id='' class='facts-title'>Spread awareness on social media</h3><p id='' class='facts-text'>Use your social media platforms to educate others about Bohring-Opitz Syndrome and share stories and experiences of those affected by it. This will help raise awareness and understanding of the condition.</p></div></div><div id='' class='facts-item'><div id='' class='facts-header'><h3 id='' class='facts-number'>3</h3></div><div id='' class='facts-text-wrapper'><h3 id='' class='facts-title'>Wear blue and green</h3><p id='' class='facts-text'>Encourage others to wear blue and green, the official colors of Bohring-Opitz Syndrome, to show support for those affected by the condition. This can be done at work, school, or in your community.</p></div></div><div id='' class='facts-item'><div id='' class='facts-header'><h3 id='' class='facts-number'>4</h3></div><div id='' class='facts-text-wrapper'><h3 id='' class='facts-title'>Organize a support group</h3><p id='' class='facts-text'>Reach out to other families and individuals affected by Bohring-Opitz Syndrome and organize a support group. This can be a great way to connect, share experiences, and offer support to one another.</p></div></div><div id='' class='facts-item'><div id='' class='facts-header'><h3 id='' class='facts-number'>5</h3></div><div id='' class='facts-text-wrapper'><h3 id='' class='facts-title'>Host a documentary screening</h3><p id='' class='facts-text'>Find a documentary or film about Bohring-Opitz Syndrome and organize a screening for your community. This will help raise awareness and understanding of the condition while also creating a space for discussion and support.</p></div></div>
<div id='' class='whywelove-item'><div id='' class='whywelove-letter-cont'><div class='whywelove-letter'>A</div></div><div id='why-we-love-main-cont'><h3 id='' class='whywelove-title'>It raises awareness for a rare disease</h3><p id='' class='whywelove-text'>Bohring-Opitz Syndrome (BOS) is a genetic disorder that affects only a small number of people worldwide. By having a designated awareness day, it brings attention to this rare condition and helps educate others on its symptoms, diagnosis, and treatment.</p></div></div><div id='' class='whywelove-item'><div id='' class='whywelove-letter-cont'><div class='whywelove-letter'>B</div></div><div id='why-we-love-main-cont'><h3 id='' class='whywelove-title'>It provides support and solidarity for those affected</h3><p id='' class='whywelove-text'>For individuals and families living with BOS, having a designated day helps them feel less alone in their journey. It allows for connections to be made with others who understand what they are going through and provides a sense of community and support.</p></div></div><div id='' class='whywelove-item'><div id='' class='whywelove-letter-cont'><div class='whywelove-letter'>C</div> </div><div id='why-we-love-main-cont'><h3 id='' class='whywelove-title'>It encourages fundraising and research efforts</h3><p id='' class='whywelove-text'>Designating a specific day helps to focus fundraising efforts towards finding a cure or better treatments for BOS. It also sheds light on the need for more research to be done in order to fully understand this rare genetic disorder and its impacts on those who have it.</p></div></div>
<div class='facts-item'><div class='facts-number-wrapper'><p class='facts-number'>1</p></div><div class='facts-core-content'><h3 class='facts-title'>Bohring-Opitz Syndrome is Extremely Rare</h3><p class='facts-content'>One of the reasons BOS is not widely known is due to its rarity. To date, there are less than 100 reported cases worldwide, highlighting the uniqueness of each individual's experience.</p></div></div><div class='facts-item'><div class='facts-number-wrapper'><p class='facts-number'>2</p></div><div class='facts-core-content'><h3 class='facts-title'>BOS is Caused by a Mutation of the ASXL1 Gene</h3><p class='facts-content'>This mutation, discovered in 2011, is believed to affect developmental processes, causing a range of physical and mental complications associated with this syndrome.</p></div></div><div class='facts-item'><div class='facts-number-wrapper'><p class='facts-number'>3</p></div><div class='facts-core-content'><h3 class='facts-title'>BOS Affects Multiple Parts of the Body</h3><p class='facts-content'>Although it affects individuals differently, common symptoms of BOS include growth delay, intellectual disability, unique facial features, and feeding difficulties.</p></div></div><div class='facts-item'><div class='facts-number-wrapper'><p class='facts-number'>4</p></div><div class='facts-core-content'><h3 class='facts-title'>BOS is Diagnosed Mostly in Infancy</h3><p class='facts-content'>Given its impact on developmental processes, BOS is often recognized in the first few months of life based on observation of growth patterns and genetic testing.</p></div></div><div class='facts-item'><div class='facts-number-wrapper'><p class='facts-number'>5</p></div><div class='facts-core-content'><h3 class='facts-title'>Living with BOS Requires Comprehensive Care</h3><p class='facts-content'>Due to its wide-ranging effects, managing BOS often requires a multi-disciplinary medical team, focusing on various aspects like feeding support, physical therapy and managing other associated conditions.</p></div></div>
Bohring-Opitz Syndrome Day is celebrated on April 6th every year. In 2024 Bohring-Opitz Syndrome Day will occur on a Saturday.
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