Some Handy Resources For Apert Syndrome Awareness Month
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Some Handy Resources For Apert Syndrome Awareness Month

June is Apert Syndrome Awareness Month!

As summer sets in, let’s take a moment to learn a little more about this rare disease and do our part to raise some awareness!

Apert syndrome is a rare genetic disorder that is characterized by an abnormal development of the skull, which is seen in babies with a distorted shape of the head and face. In addition, many children also have other birth defects and mental retardation.

To read more about Apert syndrome, including symptoms, causes, and treatment options – click here!

So what are some resources you can visit to learn more and stay connected with the community?

FACES: The National Craniofacial Association

FACES provides financial support for non-medical expenses to patients traveling to a craniofacial center for treatment. Eligibility is based on financial and medical need. Resources include newsletters, information about craniofacial conditions, and networking opportunities.

Teeter’s Page

The website was made and run by the family of Elizabeth Sears, aka Teeter, who is diagnosed with Apert syndrome. It’s a great place to connect with others and raise some money.

Children’s Craniofacial Association 

The Children’s Craniofacial Association is a national,  nonprofit organization, headquartered in Dallas, Texas. Nationally and internationally, CCA addresses the medical, financial, psychosocial, emotional, and educational concerns relating to craniofacial conditions.

The Craniofacial Center

Visit Dr. Jeffrey Fearon’s informative website that is very lay-friendly (easy on the medical jargon!) and simple to understand.

And below are some books that are worth checking out!

So please share this post or these tips with someone in need of it and keep the Apert/craniofacial community in your thoughts and advocacy during the month of June and all year-round!

How are you supporting Apert Syndrome Awareness? Share your stories, thoughts, and hopes with the Patient Worthy community!