Watch and see why you should come to this year’s Family Conference!
- March 1 – Deadline to Submit Application for Bev Meier’s Golden Ticket Fund
- June 15 – Deadline to Submit Family Conference Registration Form
- June 20 – Deadline to Reserve Hotel Room
- July 18-20 – Ectodermal Dysplasias Research Study at NIH
- July 18 – Training for Advocacy Day on Capitol Hill
- July 19 – Advocacy Day on Capitol Hill
- July 20-22 – Family Conference
- July 22 – Rally for Ally
About Family Conference
The National Foundation for Ectodermal Dysplasias (NFED) Family Conference is for everyone affected by ectodermal dysplasias and their loved ones. Come and spend three days that will transform your life!
Our caring staff and families will welcome you with open arms and understanding. You will quickly experience – not just know – that you are not alone. You will develop a support network of others affected by ectodermal dysplasias and learn from their practical tips and ideas.
See your future as you learn from others who are older or who have had experiences that await you. You will meet people who want to take charge of their ectodermal dysplasias, their health and their life. These friends can last a lifetime.
- Meet medical and dental experts and have the unique opportunity to talk with them one-on-one to ask questions. They are not just knowledgeable but compassionate.
- Learn about current therapies and discover ways to cope with the emotional challenges of ectodermal dysplasias.
- Learn how to advocate for yourself, for your loved one and for the entire ectodermal dysplasias community. Be motivated by inspirational speakers.
- You also can share your insights and story to inspire and help others.
- Stay in the know by hearing the latest research developments for your type of ectodermal dysplasia.
- Come and have fun in the historic and scenic United States capital! Falls Church is right outside of Washington D.C.
Advocacy Day on Capitol Hill
Join us on Wednesday, July 19, before the Family Conference begins, for Advocacy Day on Capitol Hill. You will be given instructional guidance for Advocacy Day on Tuesday, July 18. While on Capitol Hill, you will have the opportunity to speak with your senators and representatives, explain ectodermal dysplasia, share the many problems with the teeth, that health insurance companies deny (in most instances covered claims) necessary medical care and treatment for teeth resulting from this congenital anomaly and that you want a federal law passed that will end this practice. If you are attending Family Conference, you can sign up for Advocacy Day on the Family Conference Registration Form. If you are not attending Family Conference, use this form to sign up to participate in Advocacy Day.
Ectodermal Dysplasias Research Study
Doctors at the National Institutes of Health (NIH) are conducting a study that will identify the conditions of craniofacial abnormalities, including ectodermal dysplasias, in an effort to develop treatments specific to the type of the condition. The research team invites volunteers with the condition, their family members and healthy volunteers to participate. Eligibility conditions will be available soon. NIH will schedule appointments for individuals and families affected by ectodermal dysplasias the week of July 17-21. All study-related tests and procedures are provided at no cost. All participants will receive a medical and dental exam, DNA sample (blood or buccal swab) and/or Cone Beam CT scan of the face, head and neck. Learn more about the study.
If you are attending Family Conference, you can sign up for this research study on the Family Conference Registration Form. If you are not attending Family Conference, use this form to sign up to participate in the research study.
Kays’ Kids Camp and Teens Program
Sponsored by Louis J. and June E. Kay
Kays’ Kids Camp is available for children ages infant-12 years old. Teens Program is for children 13–17 years old. Both programs include fun, age-appropriate workshops, entertainment, arts and crafts, and social time with others who are affected by ectodermal dysplasias or who have siblings that are.
The Westin Tyson’s Corner, 7801 Leesburg Pike, Falls Church, Virginia. Special Room Rate: $109/night plus taxes. Book your room by calling 888-627-8970 or by reserving online. Room block deadline is June 20. The room block rate is valid July 17-July 24.
Includes Thursday dinner, Friday breakfast, lunch and dinner; and Saturday breakfast and lunch; Kays’ Kids Camp and Teens Program
- Adult (18 and older) – $185
- Children (birth–17) – $125
Late Registration (Register June 16 or later)
- Adult (18 and older) – $250
- Children (birth–17) – $185
Bev Meier’s Golden Ticket Fund
Scholarships are available to help attend the Family Conference. Funding is limited. Deadline to apply is March 1. You can apply using the Family Conference Registration Form.
Rally for Ally
Rally for Ally is an annual fundraiser honoring Ally Kelso to benefit the National Foundation for Ectodermal Dysplasias. This year, the George/Kelso/Matus families are hosting the event on the Saturday evening following the Family Conference in nearby Vienna, Va. This is a separate event from the Family Conference. Learn more and sign up to attend Rally for Ally.
Sponsorship and Ads
We are searching for businesses and individuals to sponsor the Family Conference. We also offer opportunities to purchase an ad in the Family Conference program.Download the Sponsor and Ad Form