Family Conference Canceled Due to Coronavirus

To protect the health and safety of families affected by ectodermal dysplasias, the NFED has canceled our 2020 Family Conference in Washington D.C.

Life in a Raindrop

Elizabeth Hoverman has an extraordinary talent for perceiving color and expressing herself through beautiful art. Her photography has won contests and was recently celebrated during Rare Disease Week on Capitol Hill. Affected by EEC syndrome, this artist invites you to look beyond the surface – of her art and her syndrome.

ELSA Reaches Supermajority in the House

Our advocates’ hard work is paying off! It’s been one year since the Ensuring Lasting Smiles Act (ELSA) was re-introduced in Congress. We now have a supermajority in the House who are cosponsoring it!

We Celebrate Ectodermal Dysplasias globally!

The National Foundation for Ectodermal Dysplasias (NFED) has been celebrating Ectodermal Dysplasias Awareness Month throughout February and Rising Up for Rare! But today, 2-20-2020, we join with the ectodermal dysplasias support groups in other countries to celebrate the first International Ectodermal Dysplasias Awareness Day. We are very proud of our international partners and collaborations! Let…