HOPE constantly moves us forward! It allows us to see the future with anticipation and appreciation – inside and out. In this year filled with so much uncertainty, HOPE provides us with the energy and determination to move forward with JOY.

Charlie and Mary Kaye Richter, left, were the original NFED family who founded this great organization! Ronan Claire, right, has a smile that brightens everyone’s day.

A Holiday Gift of Hope!

This holiday season, we have all been gifted with the largest present of all! We have received the gift of HOPE in the form of a collaboration agreement between the EspeRare Foundation and the Pierre Fabre group for the development and commercialization of ER-004.

This is a prenatal treatment for x-linked hypohidrotic ectodermal dysplasia (XLHED), a form of ectodermal dysplasia characterized by the lack of dermal structures, such as hair, sweat glands, and salivary glands.

Clinical studies are expected to start in 2021 and will aim at qualifying and registering what may become the first approved treatment for XLHED by 2026 and create a future for children with XLHED will be born with working sweat glands and more tooth buds!

This is the purest form of HOPE that any of us could ask for as this tumultuous year comes to a close. This research breakthrough offers a bright future and the change we need for our community – and continues to drive our mission forward. 

The National Foundation for Ectodermal Dysplasias (NFED) is working with EspeRare to provide support in any way we can to advance this potentially life-changing research.

Amelia Ruhl and Erin Brown’s smiles and twinkling eyes give us great joy and hope.

Hope for the Future

Although this treatment is only effective for in-utero therapy in late pregnancy for XLHED, we HOPE it will open doors for other research – and inspire treatment and cures for all forms of ectodermal dysplasias.

Through our combined efforts – and your support – we will further advance technologies and research that promise to provide HOPE for so, so many! 

Kannon and Kage Koser (left) in their holiday pajamas and Adelaide Inman showing her bright smile.

Opening New Doors

Your support enables the NFED to provide more and more HOPE to all of our communities. It’s what fuels everything we do… our research, our education, our advocacy, our treatment assistance, and (when we are not confined to our homes and wearing masks) – our Family Conferences! 

Families like Liam Gilbert’s (left) will benefit from the new XLHED research in the future. Karis Higgins, Charley Richter and a pal have fun and made friends at the NFED Family Conference.

Together in Hope!

We know that the foot we put forward today, will be the foot that leads us to our goals of tomorrow! When we all work together, we are forever strong and able to continue spreading hope and kindness to our families – and to each other.  

Together, we are strong! Together, we are the Amazing Power of HOPE. Together, we are the NFED!

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