We offer numerous programs to help you better understand ectodermal dysplasias and to provide the support and assistance you and your family need to live your best lives.
- Ectodermal Dysplasias Advocacy Day on Capitol Hill
- First Connect
- Family Liaison Program
- Family Conference
- Regional Family Conference
- Dental Treatment Centers
- Treatment Assistance Program
- Insurance Assistance Program
- Ectodermal Dysplasias International Registry
- Research Program
Ectodermal Dysplasias Advocacy Day on Capitol Hill
We are working to get a federal law that would mandate health insurance benefits for dental care of ectodermal dysplasias. Each year, our community goes to Capitol Hill in Washington, D.C. to educate legislators about ectodermal dysplasias and the impact it has on our families. Participate in Day on the Hill.
This program offers education and one-on-one support to an individual and family who has been diagnosed with ectodermal dysplasia. You’ll learn information about your syndrome, what to expect and NFED resources that could help you. A compassionate person will listen to you, allay any fears and connect you with the NFED community. Join us!
I received my (First Connect) packet. Yeahhh! Thank you so much. This was ALL very, very, very, very informative and helpful. Thank you again! – Elizabeth
Family Liaison Program
Families often want to talk to others who have “been there, done that.” Adults with ectodermal dysplasia and parents of affected children are just the people for the job. They volunteer as trained family liaisons to:
- Share experiences
- Offer support
- Discuss helpful NFED resources
Find the liaison for your region in the U.S. in our Family Liaison Directory.
Many people never see someone else who is affected by ectodermal dysplasia. Our Family Conference gives you the opportunity to meet your “NFED family.” This 3-day annual event provides a unique opportunity to:
- Meet others affected by ectodermal dysplasia
- Create a support network
- Learn from expert doctors and dentists
- Receive a free dental consult
- Participate in research
- Share your experiences and hear others’ experiences
Time and again, families tell us that attending a Family Conference changed their life. Each year, we look forward to meeting new families and reconnecting with families who come every year. It’s a family reunion not to be missed!
Our next Family Conferences will be in Washington D.C. in 2020 and in St. Louis is 2021.
Bev Meier’s Golden Ticket Fund
We believe so strongly that everyone should come to a Family Conference that we offer financial assistance. The fund is named after the late Beverly Meier, NFED’s first employee. She loved seeing the faces of new families transform as they found the support and comradeship they had been seeking, but had never imagined finding. The NFED presents Bev Meier’s Golden Tickets to help qualified families afford to attend Family Conferences. As they say in Willy Wonka and the Chocolate Factory, “In their wildest dreams, they could NOT imagine the marvelous surprises that await THEM!” Applications are available online in March.
Kays’ Kids Camp and Teens Camp
While adults attend workshops at the Family Conference, the kids and teens participate in special programming for their age group at Camp. Licensed day care providers engage them in crafts, games, entertainment and more. It’s the one time of year when children affected by ectodermal dysplasia get to hang out with other kids just like them. Watch your child’s confidence grow and life-long friendships flourish! Registration opens online in March, along with the Family Conference.
Regional Family Conference
This one-day event includes educational workshops and the opportunity for families in a particular region to socialize with one another. Doctors and dentists lecture on ectodermal dysplasia topics and answer questions. Children attend Kids Camp where they play with others like them. Professional child care workers supervise and entertain. Check out our events calendar for details on upcoming Regional Family Conferences.
Dental Treatment Centers
Finding a dentist to treat the complexities of ectodermal dysplasia can be difficult. We have created a network of Dental Treatment Centers throughout the United States to help solve this problem. Our experienced partners at universities and in private practice treat those with ectodermal dysplasia at more affordable costs. Learn more about the program here and find a Dental Treatment Center near you. Contact Kayla to apply to be seen at a Center.
Treatment Assistance Program
This program provides financial assistance to individuals affected by ectodermal dysplasias for the following:
- Dentures for children
- Air Conditioners
- Cooling Vests
Funding is limited. Priority is given to children who need dentures. The program does not cover everyday necessities such as electric bills, central air-conditioning, diapers or routine tooth cleaning. Learn more about the program and email Kayla for a Treatment Assistance Program application.
Insurance Assistance Program
You can successfully get your medical insurance to cover dental care associated with ectodermal dysplasias. But, it’ll take time, work and lots of patience. Our advisers are here to help you with this overwhelming and frustrating process. Where do you begin? What should you do? How do you appeal? Learn more about our Insurance Assistance Program and how we can help you.
Ectodermal Dysplasias International Registry
The Registry is our resource for connecting researchers with individuals affected by ectodermal dysplasias. Our online database collects and stores personal information and symptoms experienced by affected individuals. The information is used to help us better describe each type of ectodermal dysplasia. For example, if numerous families with hypohidrotic ectodermal dysplasia report a symptom that has not been associated with that condition before, we will look into whether it’s related or not. Researchers can request access to the Registry to look at de-identified information to help them pursue a promising research direction for ectodermal dysplasia. We encourage everyone affected by ectodermal dysplasia to complete a profile in the Registry. Join the Ectodermal Dysplasias International Registry today.
We serve as a catalyst for ectodermal dysplasias research worldwide. Our aim is to better understand all of the ectodermal dysplasias, identify better treatments and find cures. Through our program, we provide seed grants and access to people affected by the condition to researchers. We partner with investigators from universities and research centers as well as the National Institutes of Health to foster research projects and scientific meetings that deliver answers and increase our knowledge of these rare disorders.