Date: July 6, 2018 - July 7, 2018
Time: 8:00 am  to  5:00 pm


DoubleTree by Hilton Portland

We are heading west for our 2018 Family Conference! Join us for two days in beautiful Portland where the average temperature in July is about 80 degrees. If you have been to Family Conference before, you may have noticed that it will be a little different than other years. We have moved the date to earlier in July and the event will last for two days instead of three. Here’s what has not changed.

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.

Register Now

Download Schedule 

Kays’ Kids Camp and Teens Program

Sponsored by Louis J. and June E. Kay Foundation

Kays’ Kids Camp is available for children ages infant-12 years old. Once you complete the registration form below, you will be given a link to register your child with Helping Hand, the professional child care company we are using for Kays’ Kids Camp.

The 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.

Hotel Information

Book your room at the DoubleTree by Hilton Portland by calling, 800-996-0510 and request the National Foundation for Ectodermal Dysplasias room block or reserve online. Room block deadline is Monday, June 4. The room block rate is valid July 1 – July 7.

  • Standard Single Queen – $139
  • Premium Single King or Double Queens – $154
  • Triple/Quad Occupancy – Each additional adult 18 and older will be an additional $15 per person.

 Reserve Your Hotel 

Bev Meier’s Golden Ticket Fund

Scholarships are available to help attend the Family Conference. Funding is limited. Deadline to apply was Thursday, March 1.


Includes Friday, breakfast, lunch and dinner; Saturday breakfast and lunch; Kays’ Kids Camp and Teens Program.

Adult (18 and older) – $150

Children (birth–17) – $100

Late Registration (Register May 26 or later)

Adult (18 and older) – $200

Children (birth–17) – $150

Register Now to Attend the Family Conference


We are looking for people to donate their time to help us with many tasks at Family Conference. Would you like to work at the registration table, help set up, or chaperone a field trip? We have these opportunities and many others. Consider donating an hour to help!

Sign Up to Volunteer

Sponsorships and Program Advertising

We are seeking individuals and business to sponsor aspects of the Family Conference and advertise in the program. Learn more about these opportunities to help underwrite the Conference.

Sponsor or Advertise