Moebius Syndrome Awareness Day: Rare Disease Awareness Toolkit
Key Facts:
- Prevalence estimates range from 1 in 50,000 to 1 in 500,000 live births worldwide.
- Cranial nerves VI and VII are under-developed, causing facial paralysis and impaired lateral eye movement; ~30% of patients also have limb or chest-wall anomalies.
- No single gene has been confirmed, but mutations in PLXND1 and REV3L have been implicated; most cases are sporadic, not inherited.
- Individuals often require lifelong, team-based interventions (otolaryngology, speech therapy, orthodontics, mental-health support).
Editor's Note
This article is part of the BHM Healthcare Awareness Series, designed to provide quick, ready-to-use content and links to official resources for internal staff communications, patient education, and social media.
Feel free to copy, adapt, and share.
Observation Date
January 24
History & Impact
Moebius Syndrome Awareness Day was launched in 2011 to honor German neurologist Paul Julius Möbius (born January 24, 1853). Driven by the Moebius Syndrome Foundation and partners such as NORD and Global Genes, the day spotlights this ultra-rare congenital neurological disorder marked by facial paralysis and limited eye movement. Hospitals, schools, and advocacy groups worldwide “Show Your Rare” by wearing purple, hosting educational webinars, and sharing patient stories to advance research funding and social inclusion.
Why it Matters
- Although an estimated 3,000–10,000 people in the United States live with Moebius syndrome, delayed diagnosis and fragmented care remain common.
- Early recognition and coordinated, multidisciplinary management improve speech, nutrition, and psychosocial outcomes—key metrics for value-based care and patient-family satisfaction.
Quick Actions for Your Organization
For Leadership
Include Moebius syndrome and other rare diseases in DEI and disability-access initiatives.
Establish referral pathways to craniofacial centers and telehealth speech therapy to reduce travel burdens.
Co-sponsor Grand Rounds or CME events on complex cranial-nerve disorders with regional academic partners.
For Implementation Teams
Download the Moebius Syndrome Awareness Day social graphics and schedule posts for Jan 24 with the hashtag #MoebiusStrong.
Post laminated “Rare Disease Fast Facts” in pediatric, ENT, and genetics clinics.
Invite a local patient advocate for a lunch-and-learn; record and upload the session to your intranet for asynchronous viewing.
Resources
Ready-to-Use Assets
The following links provide resources & information for creating internal or external campaigns to support or promote this healthcare observance. Please vet these resources for alignment with your organization.
- Moebius Syndrome Foundation – Awareness Day Toolkit
- Many Faces of Moebius Syndrome – Moebius Syndrome Awareness Day
Talking Points
Copy & Paste Friendly
“Jan 24 is Moebius Syndrome Awareness Day—share a purple selfie to support the #MoebiusStrong community!”
“Facial paralysis isn’t just cosmetic; early multidisciplinary care boosts nutrition, speech, and social inclusion.”
“Rare doesn’t mean alone—download free toolkits to educate staff and patients today.”
Disclaimer: Please verify all information, usage rights, and related guidelines with the official observance organizers and your organization’s policies to ensure proper alignment.
Frequently Asked Questions (FAQ)
Q1. How do we measure success for a Moebius awareness campaign?
Track social-media reach (#MoebiusStrong mentions), intranet video views, and referrals to craniofacial or genetics clinics pre-/post-campaign.
Q2. How can individual employees visibly support Moebius Syndrome Awareness Day?
Encourage staff to wear purple or a Moebius wristband on Jan 24, post a selfie or video with the hashtag #MoebiusStrong, and share one key fact about the disorder. Provide them with the Foundation’s downloadable virtual-backgrounds, email-signature badges, and social-media graphics so on-site and remote employees can show solidarity and spark conversations.
Q3. How can I take part in observing Moebius Syndrome Awareness Day with a small budget?
Leverage free digital assets from the Moebius Syndrome Foundation, host a virtual patient panel at zero travel cost, and highlight real stories in your existing newsletters.
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