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  • 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 »
    • Video introductions to Moebius syndrome »
  • Who we are »
    • Mission and History »
    • Foundation leadership »
    • Scientific advisory board »
    • Press room »
    • Our stories »
    • Financial Overview »
  • Support & Resources »
    • Moebius Syndrome Foundation Educational Scholarship Program »
    • Resources »
    • Connect with others »
    • Newsletters »
    • Partner organizations »
    • Employment resources »
    • Financial resources »
    • Listing of healthcare service providers »
    • Dental concerns »
    • Moebius Syndrome Foundation Online Store »
  • Events »
    • Mini Conferences »
    • 2020 Moebius Syndrome Foundation Conference »
    • Moebius Syndrome Awareness Day »
    • Research symposiums »
    • MSF Regional Events »
    • Talkin’ Moebius Webinars »
    • Past Conferences »
  • Get involved »
    • Join Now »
    • Donate »
  • Research »
    • NIH research study »
    • Scientific advisory board »
    • Research symposiums »
    • Research articles »
  • Contact »
  • Home »
 
 
Moebius Syndrome Foundation

The Home for the Moebius Community TM

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For the newly diagnosed

You have found your home within the Moebius syndrome community. The Moebius Syndrome Foundation offers resources, ways to connect with other families and individuals living with Moebius, events, volunteer opportunities, education and updates on scientific advances. It is our hope that you find all the support you need.

When you are first diagnosed:

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. Check out the resources on our Website. Click here to receive an information packet. We also have t-shirts for babies and young toddlers. 

You can always 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. You will be able to talk with other newly diagnosed families and ask questions and get the support you need.

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.

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