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!
Volunteer Spotlight: Debbie Reed
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.
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…
What It Means to Have Ectodermal Dysplasias
Ectodermal dysplasias are genetic disorders that can be inherited from your parents or happen more spontaneously by changes (or mutations) in your genes before you’re born. They affect about three out of every 10,000 babies. But ectodermal dysplasias are much more than a hidden genetic issue. The disorders are characterized by abnormally functioning hair, nails,…
This Law is For You
Have you spent a year or more fighting for a health insurance claim? What has the emotional and financial impact been on you and your family when you go without care? Continual insurance denials needlessly take a toll on you and your health. The Ensuring Lasting Smiles Act can change all that. Your involvement right now is critical.
The NFED Family Rises Up for Rare
It’s Ectodermal Dysplasia Awareness Month, and we’re sharing a few stories of hope that have stuck with us. Revisit stories from those who’ve risen above the diagnosis to help and inspire others.
No Human is Limited!
Markus Kappen can’t sweat but hasn’t let that stop him from competing in triathlons. He says that you don’t choose your passion. Passion chooses you without you even noticing. In this inspirational story, he shares what he’s learned, the obstacles he overcame and what his next passion looks like.
Tellin’ the Truth About Advocacy
Have you ever said to yourself that you can’t advocate because you don’t know what you are doing or don’t have the time or can’t travel? NFED advocate Beth Orchard dispels those myths and empowers you to take action.