In this year filled with so much uncertainty, HOPE provides us with the energy and determination to keep moving forward. Here’s what gives us hope!
EspeRare Partners with Pierre Fabre to Develop Treatment for XLHED
After a challenging year, we are excited to share some good news – just in time for the holidays! The EspeRare Foundation announced a new partnership today that brings us closer to developing a potential treatment for x-linked hypohidrotic ectodermal dysplasia (XLHED). EspeRare and Pierre Fabre group have entered into an agreement to develop and…
Finding Her Voice and Rediscovering Her Tribe
Olivia was surprised that strangers would want to hear her story. She’s promoting acceptance through Operation in Full Bloom. Read the finale to this pageant winner’s story.
Palmoplantar Keratosis in Clouston Syndrome
For people affected by Clouston syndrome, the skin on their palms of their hands and soles of their feet can be thick. We have published a new medical article which explains the condition and the best ways to treat it.
The 2020 #GivingNFEDTuesday Challenge
Learn about a one-day opportunity to double your gift to the NFED and celebrate the amazing power of hope.
The Amazing Power of Hope
Olivia Daniels has faced many challenges in her 22 years. She learned to channel her feelings and experiences into acts of service and kindness. She’s an amazing creative force for good! Find out how this pageant champion is using her platform to raise awareness of ectodermal dysplasias and serve others.
Volunteer Spotlight – Tom Richardson
If you are related to an NFED staffer, there’s a good chance you have volunteered for the Foundation. Read about one husband who’s gone the extra mile to help serve our mission.
During this season of giving, let’s think like a child!
In her book Raising Charitable Children, Carol Weisman, internationally recognized philanthropy expert (and full disclosure – a friend of mine), discusses how to instill a sense of giving in children – and then watch them develop into generous, responsible, thoughtful, kind, loving and happy adults. Carol beautifully sums up her approach in one simple line:…