Dr Lisa Knobloch is a dentist who passionately cares about individuals affected by ectodermal dysplasias. For more than a decade, families have flocked to the NFED Dental Treatment Center she founded at The Ohio State University. Read about the extensive services and financial assistance they offer and what families have to say.
Remembering Joanna Daniel Nix
NFED Founder Mary K. Richter recalls the beautiful person, Joanna (Daniel) Nix. Joanna was affected by EEC syndrome and was one of the NFED”s founding families.
Taking Care of Your High Risk Loved Ones
You may be worried about how COVID-19 could affect your loved ones who are at higher risk. And that’s stressful. Follow these practical steps to keep you and your family healthy. Your NFED family is here for you!
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.
Coronavirus and Ectodermal Dysplasias
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.
Genomenon Releases Genomic Landscape for Ectodermal Dysplasias for Rare Disease Week
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.
NFED Families Rise Up for the First International Awareness Day
For the first International Ectodermal Dysplasias Awareness Day, families, friends and supporters in our global network showed up to celebrate.