National Foundation for Ectodermal Dysplasias

Our mission is to empower and connect people touched by
ectodermal dysplasias through education, support, and research.

CALL US AT (618) 566-2020

We're here to help


Ready to stand up and raise your helping hands?

To volunteer, complete a volunteer profile.

Volunteer Your Time to Change Someone’s Life

Nobody expects their child to be born with a rare genetic disorder. It can be challenging, frustrating and overwhelming.  The NFED exists to assure families they are not alone. With our help, families affected by ectodermal dysplasias are empowered to live their best life. We need your help to make this possible.

Becoming one of NFED’s Helping Hands is an investment of time, energy and heart.

Are you interested in joining forces with NFED to serve more members of the ectodermal dysplasias community and make their lives better?  If you are, we need your Helping Hands!

What is Helping Hands?

Helping Hands is the National Foundation for Ectodermal Dysplasias’ volunteer program created to

1)    increase the number of families we support and to enhance their quality of life;

2)    provide advocacy and education;

3)    raise awareness and engagement; and

4)    raise funds.

Who Can Be a Volunteer?

Everyone can find something to do, some way to contribute. Our volunteers include clients affected by ectodermal dysplasias, family members, retirees, civic groups, students, business executives, researchers and medical and dental professionals who contribute their time, knowledge and expertise to help NFED fulfill its mission.  They serve as Liaisons, Ambassadors and Advisors to help to share our story, communicate our programs, provide critical family and community support and raise needed funds.

What do NFED volunteers do?


Engage people to take action to help the NFED.

•         Raise community awareness through media stories, social media campaigns and event

•         Organize and/or assist with fundraisers to help increase and diversify the Foundation's funding base

•         Identify alternative resources for treatment funding.


Empower families by providing technical and moral support.

•         Identify and create locally-based physician referral lists, so that community members can easily locate medical and dental professionals with experience treating ectodermal dysplasias patients.

•      Educate and assist families with the process of successfully getting their dental care covered by medical insurance.

•      Guide families through school and sports advocacy programs.

•      Drive community participation with local events.


Connect with families and share their experiences.

•         Provide peer to peer support.

•         Serve as local resources for newly-diagnosed patients looking for answers and/or current family members needing support or advice.

What kind of support will I receive?

You will receive support every step of the way. Step by step templates to successfully complete tasks.


Contact Lea Richardson, at 618-566-2020

Site Copyright 2010 by National Foundation for Ectodermal Dysplasias. All Rights Reserved. St. Louis web design by Insite Advice.
The National Foundation for Ectodermal Dysplasias (NFED) is a qualified 501(c)(3) nonprofit organization.
The EIN is 37-1112496. The NFED is registered in all states where applicable.
6 Executive Dr., Ste. 2, Fairview Heights, IL 62208-1360