Turn awareness into action on April 6th
On April 6, families around the globe unite for Bohring-Opitz Syndrome Awareness Day. With an estimated 300 people diagnosed worldwide, this ultra-rare condition is often overlooked — leading to delayed diagnoses, limited treatment options, and little research funding.
Your voice can change that. Stand with us to honor our loved ones living with Bohring-Opitz Syndrome, raise awareness, and drive critical ASXL-related research forward.
Host a fundraiser or make donation in honor of someone you love who has Bohring-Opitz Syndrome. Every dollar counts and helps fuel research, education, and family support for Bohring-Opitz Syndrome.
You can take action today:
- Make a one-time donation or monthly donation in honor of someone you love
- Start a Facebook fundraiser in just a few clicks
- Add an Instagram fundraiser on a post, story, reel or live video
If you have a bigger fundraising idea, we’re here to help you put your idea into action! We can help support you with planning, promotional materials, and the technology to collect donations. Contact us
Your participation brings us closer to answers. Contribute to a research study to help shape better care for those with Bohring-Opitz Syndrome:
Learn more about Bohring-Opitz Syndrome
- About Borhing-Opitz Syndrome
- Living with Bohring-Opitz Syndrome guide
- ASXL Census: How many people have Bohring-Opitz Syndrome?
Sharable facts about Bohring-Opitz Syndrome
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Bohring-Opitz Syndrome is a neurodevelopmental disorder.
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Bohring-Opitz Syndrome is caused by a change, commonly called a mutation, on the ASXL1 gene. This change is typically random and happens shortly after conception.
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There are an estimated 300 people diagnosed with Bohring-Opitz Syndrome globally.
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Bohring-Opitz Syndrome is in a subcategory of rare disorders called “ultra rare.”
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The features and abilities of people with Bohring-Opitz Syndrome varies greatly. We do not yet know why there is a broad spectrum of features and abilities.
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Some of the most common features of Bohring-Opitz Syndrome include developmental delay, intellectual disability, low muscle tone, feeding difficulties, constipation, seizures, sleep difficulties, and flexed joints.
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Bohring-Opitz Syndrome Awareness Day is on April 6 in recognition of the date the Bohring-Opitz Syndrome family support group on Facebook was created.
Raise awareness on social media for #bosawarenessday!
Create a custom social media profile frame
Pick from one of several social media frames that you can customize with your own picture on Twibbonize. Choose your frame, add your photo, download the image, and save it as your profile picture on your social media accounts.
Reshare ARRE Foundation content
Follow us on Facebook and Instagram and reshare our Bohring-Opitz Syndrome Awareness Day content.
Create and share your own content
Use the facts on this page and the graphics below to create your own social media content. If you’re planning a larger campaign, we can help with additional graphics and information. Contact us
Download and share graphics
Select the image to download it for use on your social media channels. Don’t forget to tag us in your posts!
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- Downloadable graphic – square
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- Downloadable graphic – Instagram
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- Downloadable graphic – Facebook
Additional fundraising and awareness-raising resources include:
- ARRE Foundation: Advancing research for ASXL-related disorders (4-minute video)
- Finding answers through research (45-second video)
