Volunteers are the heartbeat of the National Foundation for Ectodermal Dysplasias (NFED)! We celebrate you this Volunteer Appreciation Week, because we know that every act of service builds a stronger Foundation and a more cohesive ectodermal dysplasias community.

Our committed volunteers span the globe and lend their time, skills, and passion to make a real difference in their own backyards. This causes a ripple effect for which the impact can’t be measured.

A rare disorder diagnosis can make you feel alone in the world. Volunteerism fosters connections, understanding and joy which can help lift you out of that isolation. Your service can break down barriers and create awareness not only for your condition, but for all the incredible people the NFED serves around the world.

Volunteers in Action

Thank you for using your voice to spread knowledge. We could not have had 153 meetings with legislators at the Advocacy Day on Capitol Hill last fall without YOU sharing your story and advocating for the Ensuring Lasting Smiles Act (ELSA). Brave advocates are advancing ELSA in Congress!

The NFED salutes the selfless and kind-hearted people who helped make the Family Conference in Colorado last summer a sanctuary where friendships were fostered and knowledge shared. Attendees gave back by introducing speakers, selling merchandise, registering guests and more. You are the heroes in our book!

NFED families have long been outstanding research volunteers. Thank you to everyone who completed surveys and participated in the Edelife Clinical Trial in the last year. You are the ones who make sure ectodermal dysplasias research continues to thrive. You participated for the good of all individuals affected by ectodermal dysplasias and understood that your efforts may benefit generations to come. Bravo!

Dedicated families hosted fundraisers and the Halloween Bash which generated significant funds for the foundation. These events are time and labor intensive but their profits are critical to underwriting our $1.1 million budget. Thank you, fundraisers!

We could not raise awareness about the ectodermal dysplasias experience without YOU having the courage to talk about what it’s like to be affected. Thank you for working with us to tell the world about ectodermal dysplasias. By sharing our Facebook and Instagram posts, you help us grow the number of NFED followers and expand our community.

The NFED could not achieve 43 years of success without the dedicated experts on the Board of Directors, Scientific Advisory Council, and Patient Care Council. They provide leadership, professional skills and wise counsel – and they do it for free! Their contributions are invaluable. 

You are Seen and Appreciated

We could not have achieved longevity and prospered without the many helping hands behind the scenes – the unsung heroes. You have the undeniable power with every volunteer action take for the NFED, no matter how small, to make a significant difference. Your passion and energy are unparalleled and we respect your volunteering spirit immensely. Today – and every day – we sing your praises!

Get Involved

Have you thought about helping the foundation but aren’t sure where to start? Would you like to actively shape a better future for people affected by ectodermal dysplasias? Check out some of the numerous ways you can volunteer. You can also email me or call me at 618-566-6871 to discuss your unique talents and how they can best serve our mission. Our NFED family needs you!


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