The world can be a pretty lonely place if you think that yours is the only family navigating the twists and turns of life with ectodermal dysplasia. But there’s no need to live on an island! There are plenty of ways to start making connections and building a network of love and support, including attending ectodermal dysplasia conferences.
A Legacy of HED: Finding Answers for the Reeder Family
Ectodermal dysplasia runs in Kylie Reeder’s family. After she married, her in-laws learned that the daughter they are adopting may also share the condition.
Must See In Washington D.C.
Washington D.C. is not just our country’s capitol. It is filled with delicious places to eat, cultural events and filled with American history. You can find it all in D.C. Here are just a few of the many places you can visit while you are there during the Stand Together Conference. You can also view…
Family Conference Sponsors Needed
Each year, we hold our Family Conference that provides life-changing experiences for our families at the National Foundation for Ectodermal Dysplasias (NFED). Annually, 300 to 400 people from all over the world and the U.S. get to experience that they are no longer alone. They get to connect with other families and talk to doctors…
10 Tips for Family Conference First-Timers
Are you heading to Falls Church, Virginia, this summer to attend the National Foundation for Ectodermal Dysplasias Family Conference? Our veteran attendees have some great tips for you. Some of the best knowledge you gain is from the interaction with other families. Ask,ask,ask…anything! Write down all your questions so you don’t forget. Everyone is there…
Expanding Our Volunteer Team in 2017
Service and giving are qualities that are greatly cherished by all of us at the NFED. You, as a volunteer, help our organization by lending a kind helping hand – and our only payment to you are wages of love, gratitude and knowing that you are making a significant impact on lives. Everyone has such busy…
Things to do in the hotel during Conference
Curious about what you can do during your spare time at the Family Conference. They offer: Business center. Need to work for a few hours while at the conference. Here is what the business center has to offer: Audio/Visual Equipment Rental Complimentary Printing Service Fax Meeting Rooms Photo Copying Service ($0.10) Printer Indoor Pool.Too hot…
Things to do in Chesterfield
Sachs Butterfly House at Faust Park (6 minutes from hotel): More than a thousand live tropical butterflies fly freely in the glass conservatory at the Sophia M. Sachs Butterfly House. Watch a butterfly emerge from a chrysalis right before your eyes. Or go outside and visit native and migrating species in the Butterfly Garden. (*$6 general…