The world can be a pretty lonely place if you think that yours is the only family navigating the twists and turns of life with ectodermal dysplasia. But there’s no need to live on an island! There are plenty of ways to start making connections and building a network of love and support, including attending ectodermal dysplasia conferences.
Ectodermal Dysplasia Conferences
Our annual Family Conference is the perfect way to meet other families affected by ectodermal dysplasia. Kids, teens and adults of all ages have the opportunity to make lifetime friends and swap stories, advice and ideas in a welcoming and understanding environment.
Ectodermal dysplasia conferences will also be a learning experience, giving you the chance to speak with experts on ectodermal dysplasias. Our Family Conference gives you the following opportunities:
- Listen to inspirational speakers
- Ask questions one-on-one with medical and dental experts
- Learn about current therapies and treatments
- Discuss coping mechanisms for the emotions that often accompany ectodermal dysplasias
- See how you can advocate for the ectodermal dysplasias community
- Learn about recent discoveries in the research world
This year, a record number of members will be attending our Family Conference in Falls Church, Virginia, just outside of Washington D.C. We’re so excited to see everyone there!
More Ways to Connect
Aside from attending our ectodermal dysplasia conferences, there are a variety of ways for you to connect with and even meet other families going through similar experiences. When you become a member of the NFED, you’ll have access to the abundance of experiences and resources available through our tight-knit community.
Ask Us for a List of Affected Individuals
Once you become a member of the NFED, you’ll have the option to connect with other members living nearby, or with families and individuals affected by the same syndrome as yours. To receive a list, you’ll need to first give us permission to include your contact information on that same list.
Connect with Your Family Liaison
NFED family liaisons are volunteers with experience living with ectodermal dysplasia, usually an affected adult or the parent of an affected child. Meet with the liaison nearest to you to share experiences, get support and learn about other NFED resources that could be helpful for you.
Join One of Our Facebook Groups
Our private Facebook groups allow members with the same syndrome or experiences to chat online about ectodermal dysplasias and a variety of other topics. We try to limit group members to the designated audience of each group. Join the conversation!
Chat with NFED Staff
We’re always here to help. If you want to learn more about the resources we offer, or just want someone to chat with about a recent trip to the dentist, you can reach out to us. We’ll listen and do our best to connect you with the resources you need to live your best life with ectodermal dysplasias.
Are you looking to join a supportive community of those affected by ectodermal dysplasias? We’re here to connect all those affected through an environment of love and support. Let’s talk!