To protect the health and safety of families affected by ectodermal dysplasias, the NFED has canceled our 2020 Family Conference in Washington D.C.
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.
The coronavirus (COVID-19) is dominating the news the past few weeks as more cases are being reported around the world. We reached out to one of our medical advisers to ask whether individuals affected by ectodermal dysplasias have any special considerations to take in regard to the virus. Here’s what we learned.
The NFED has collaborated with a genomic health IT company to release a new diagnostic tool for ectodermal dysplasias. Genomenon has released a comprehensive dataset that will provide doctors and researchers with genetic insights. Find out how this could lead to better treatments, too.
For the first International Ectodermal Dysplasias Awareness Day, families, friends and supporters in our global network showed up to celebrate.
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!
Debbie Reed is a passionate volunteer who celebrates Ectodermal Dysplasias Awareness Month every day in February. Learn what she does and why she does it.
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…