• About Moebius
    • What is Moebius syndrome?
    • For the newly diagnosed
    • For infants and children living with Moebius syndrome
    • For young adults
    • For adults living with Moebius syndrome
    • For friends and relatives
    • For professionals
    • Treatment options
  • Who we are
    • Mission and History
    • Foundation Leadership
    • Scientific Advisory Board
    • Press room
    • Our stories
    • Financial Overview
  • Support & Resources
    • Videos, Webinars, and Products
    • Articles, Publications & Books
    • Moebius Syndrome Foundation Educational Scholarship Program
    • School Resources
    • Connect with Others
    • Newsletters
    • Partner organizations
    • Employment resources
    • Financial resources
    • Listing of healthcare service providers
    • Dental concerns
    • Moebius Syndrome Foundation Online Store
  • Events
    • 2023 Moebius Syndrome Foundation Minneapolis Conference
    • Moebius Syndrome Awareness Day
    • Past Conferences
    • Moebius Syndrome Foundation Scientific Research Symposium
  • Get involved
    • Join Now
    • Donate
    • Moebius Syndrome Foundation Legacy Society
  • Research
    • Overview
    • NIH research study
    • Scientific Advisory Board
    • Research symposiums
    • Research articles
  • Videos
  • About Moebius »
    • What is Moebius syndrome? »
    • For the newly diagnosed »
    • For infants and children living with Moebius syndrome »
    • For young adults »
    • For adults living with Moebius syndrome »
    • For friends and relatives »
    • For professionals »
    • Treatment options »
  • Who we are »
    • Mission and History »
    • Foundation Leadership »
    • Scientific Advisory Board »
    • Press room »
    • Our stories »
    • Financial Overview »
  • Support & Resources »
    • Videos, Webinars, and Products »
    • Articles, Publications & Books »
    • Moebius Syndrome Foundation Educational Scholarship Program »
    • School Resources »
    • Connect with Others »
    • Newsletters »
    • Partner organizations »
    • Employment resources »
    • Financial resources »
    • Listing of healthcare service providers »
    • Dental concerns »
    • Moebius Syndrome Foundation Online Store »
  • Events »
    • 2023 Moebius Syndrome Foundation Minneapolis Conference »
    • Moebius Syndrome Awareness Day »
    • Past Conferences »
    • Moebius Syndrome Foundation Scientific Research Symposium »
  • Get involved »
    • Join Now »
    • Donate »
    • Moebius Syndrome Foundation Legacy Society »
  • Research »
    • Overview »
    • NIH research study »
    • Scientific Advisory Board »
    • Research symposiums »
    • Research articles »
  • Videos »
 
 
Moebius Syndrome Foundation
Platinum Transparency Award

The Home for the Moebius Community TM

Make a donation » Leave a Legacy » Join or Update »

CONTACT US

844-MOEBIUS  

(844-663-2487)

Moebius Syndrome Foundation

1312 17th Street #976
Denver, Colorado  80202

info@moebiussyndrome.org

Facebook Twitter Vimeo LinkedIn Instagram

For the newly diagnosed

When you are first experiencing a diagnosis:

Please don’t panic. When we first hear the diagnosis we automatically think the worst…

It is very difficult to enter into unknown territory. You will experience all kinds of emotions and you may feel very alone. With a rare condition it is difficult to find others who truly understand what you are feeling. Educate family and friends and allow them to participate in the process of understanding with you.

Your first steps:

You want to make sure you are acquiring correct information. After getting the specifics from your doctor or specialist, a good resource is the Moebius Syndrome Foundation.

Click here to receive an information packet. We also have t-shirts for babies and young toddlers. 

View an online version of the Moebius Syndrome Foundation Welcome Booklet. This is a great option for those that live outside of the U.S.A.

 

Please feel free to email us or give us a call.

Connecting with others who have lived with Moebius is the most accurate, specific and up-to-date source of knowledge and support. Join one of the Facebook groups set up specifically to provide conversation and support. Find our groups here.

Remember, you are not alone!

When you visit a doctor:

Do as much research as you can before your doctor’s visits. Arm yourself with information about Moebius to educate the doctor. Write down specific questions as you think of them, don’t rely on memory because this is a stressful time.

As you travel down this road:

This is a stressful time in your life but always remember that it will get easier as you gain information and support. You will become your own biggest advocate.

  • Who we are
  • Support & Resources
    • Articles, Publications, and Books
  • Get involved
  • Blog
  • Home
  • Privacy Policy
  • Join our community!

© Copyright 2007-2023. The Moebius Syndrome Foundation. All rights reserved.

This is the official website of the Moebius Syndrome Foundation, a 501 (c) 3 organization. The Moebius Syndrome Foundation and its Board does not diagnose Moebius syndrome in individuals nor does it endorse particular medical professionals, treatments, products or services. The Moebius Syndrome Foundation has trademarked its logo and tagline. Expressed written consent is required for use.

DC Web design by the MightyLittleWebShop.com

 
We use cookies to ensure that we give visitors the best experience on our website. If you continue to use this site we will assume that you are OK with our use of cookies.Ok