Bohring-Opitz Syndrome Day
Bohring‑Opitz syndrome is a rare genetic disorder caused by a new mutation in the ASXL1 gene. It brings together many complex challenges.
Activate rare-disease awareness and community support through storytelling and peer connection, positioning your brand as an ally to underserved families.
- Share a family's daily win or challenge with BOS—humanize rare disease through personal narrative
- Host a low-cost fundraiser (bake sale, game stream) tied to BOS research and support programs
- Educate your audience on rare genetic conditions and how to be a better ally—position expertise as trust-building
- Spotlight the gold & denim color theme as a symbol of strength; encourage visible solidarity and peer conversation
Bohring-Opitz Syndrome Day began with one mother’s search for connection. In 2011, Sünne van Gemert-Godbersen started a Facebook group after her daughter received a rare diagnosis.
At the time, very little information was available, and few families had heard the name.
The group quickly became a safe place to share updates, photos, and advice. It brought together families across countries, languages, and time zones.
In 2015, the first official awareness day was launched. Taylor Gurganus, whose son also has the condition, helped lead the effort. She worked with other parents to mark the day each year.
They chose the date the support group was created to honor the community’s beginning. Gold and denim became the theme.
Gold represents the strength and light in these children’s lives. Denim connects with the wider rare disease movement.
Now, the day has reached far beyond a small group online. Each year, more people learn about the condition, share stories, and support new research.
Families no longer feel so alone. The day gives them space to speak, reflect, and find others who understand.
With each message shared or ribbon worn, the voices grow louder. Bohring-Opitz Syndrome Day continues to build strength through community and awareness.
Wear Something Meaningful
Choose a bold piece of clothing in blue or gold. These colors show support and help spark fresh conversations. Add a denim pin or ribbon. It doesn’t have to be fancy—just visible. Friends might ask what it means, giving you a chance to share facts.
Share a Story
Use social media to post a short message, photo, or video. Focus on a family’s daily wins or challenges. You could also link to helpful resources. Personal stories move people. They often open the door for deeper understanding and lasting support.
Host a Fundraiser
Plan a small bake sale, quiz night, or game stream. It doesn’t need a big budget. All proceeds can go toward research, support programs, or awareness materials. Even a tiny donation helps grow community resources and fuel scientific progress.
Connect With Others
Join an online group or event focused on rare conditions. Leave a kind comment or attend a live chat. Many families feel isolated. Hearing from others—whether they have the syndrome or just care deeply—can be a big comfort.
Learn Something New
Watch a short video or read a blog post from a medical expert or caregiver. Understanding leads to better conversations. You’ll become a stronger ally simply by learning how to talk about it. Curiosity is one of the easiest ways to make change happen.