Live Webinar
Duration: Two Hours
Price: Free
This webinar is open to individuals affected by ankyloblepharon-ectodermal defects-cleft lip and/or palate (AEC) syndrome. (You might be more familiar with other names for this syndrome: Hay Wells syndrome and Rapp Hodgkin syndrome. They are all the same syndrome which you can read about here.)
Families affected by acro–dermato–ungual–lacrimal–tooth (ADULT) syndrome and limb-mammary syndrome are also welcome to participate.
So much of what we have learned about AEC syndrome has come from bringing affected families together and listening. You are invited to attend this free, two-hour Zoom meeting to hang out with other AEC families.
Two to three people will share their AEC story to start the meeting. Then, it’s open mic! You will get the opportunity to ask questions, offer support, share your story or discuss something that has worked for you.
Get ready to not only learn but share your own wisdom!
This webinar will NOT be recorded so you must participate live.
SIGN UPWhat topics would you like to hear discussed?
Once you have signed up, next we’d like to hear what three topics related to EEC syndrome you would like to hear discussed.
Tell Us Your Three Topics View All Upcoming Free WebinarsIf you have any questions about this webinar, contact Kelley at Kelley@nfed.org or 618-566-2020.
Disclaimer: This webinar is not intended as a substitute for medical advice. Only a healthcare provider with a full medical history may determine the proper treatment options. Opinions shared do not necessarily reflect those of the NFED. Topics, speakers and date are subject to change.