AEC Syndrome: What to Know If Your Baby is Affected

If your baby has been diagnosed with ankyloblepharon-ectodermal defects-cleft lip and/or palate (AEC) syndrome or if you suspect he or she might be affected, you have come to the right place! Here are some key things to know and resources to help you care for your baby.

Leaving My Comfort Zone to Advocate For My Family

As a self-described, shy, introvert, Sarah Ward could never have imagined that she would be meeting with Congress to talk about her family’s rare genetic disorder. The passionate advocate shares her journey and why she has found the strength to speak up!

10 Great Tips for Advocating for ELSA

NFED mom and advocate, Samantha Mueller, has passionately advocated for the Ensuring Lasting Smiles Act since its beginning. She encourages families to take action using her easy tips!

New Insurance Section on Website

Getting your health insurance to pay for your dental care can be tough. We can help! Use our expanded insurance resources to map out your journey to success!

ELSA Picks Up Speed After Fantastic Virtual Hill Day

It’s extraordinary what our advocates and staff have accomplished in just two months since the Ensuring Lasting Smiles Act (ELSA) (S.754/H.R.1916) was re-introduced in the 117th Congress! Our brave advocates shared their struggles on our Virtual Advocacy Day on Capitol Hill. Find out what’s happened with ELSA since they shared their stories.

Twin Voices of the Future for Ectodermal Dysplasias

Life has been full of surprises for the Sanmiguel Bejarano family. They are teaching their daughters how to rally in the face of the unexpected. Alicia and Luna share what they want others to understand about their rare condition. They are becoming the Voices of the Future for ectodermal dysplasias.