Join Us for the NFED Family Conference!
July 10-12, 2025
Registration Now Open!
The National Foundation for Ectodermal Dysplasias (NFED) Family Conference brings together people affected by ectodermal dysplasias and their families. Join us for three days of learning, support, and fun!
Connect with others, build friendships and share experiences. Meet medical and dental experts, ask questions, and learn about treatment options. Empower yourself and advocate for the ectodermal dysplasias community.
Please email Kelley at kelley@nfed.org with any questions.
Fees for the Family Conference
Your Family Conference registration fee includes Thursday dinner; Friday breakfast, lunch, and dinner; Saturday breakfast and lunch; and Kays’ Kids Camp and Teens Program activities. Each paid registration will receive a Conference T-shirt.
Regular Registration by May 31, 2025
Adult (18 and older) – $215
Children (birth–17) – $125
Last Call Registration from June 1-9, 2025
Adult (18 and older) – $400
Children (birth–17) – $200
Lodging
A room block has been reserved at the Double Tree by Hilton Bloomington – Minneapolis South, MN. The cost of lodging is not included in your conference registration fees. Our group rate is $159 per night plus taxes and fees. To secure the group rate, you must make your reservation by 5 p.m. Mountain Time on Tuesday, June 17, 2025.
Make your room reservation today!
Scholarship
The Bev Meier’s Golden Ticket Scholarship Fund provides opportunities to help families attend the 2025 conference. These scholarships are awarded to cover registration and lodging. We hope to make the conference accessible to all families affected by ectodermal dysplasias.
The deadline to apply for scholarships will be February 17, 2025.
Check Back Soon for the Full Agenda
- Thursday, July 10, 2 p.m. – 9 p.m.
- Friday, July 11, 9 a.m. – 9 p.m.
- Saturday, July 12, 8 a.m. – 2 p.m.
What to Expect at the Family Conference!
Get ready for another unforgettable experience filled with fun, learning, and connection. At the 2025 Family Conference, attendees will enjoy:
Social Gatherings
It’s time to relax and unwind from the day. Attendees are encouraged to gather together and continue their conversations after dinner on Thursday and Friday. The famous pool party will be on Friday evening. Make sure to bring your swimsuit.
General Sessions
General sessions will include topics closely related to symptoms and treatments related to ectodermal dysplasia. Session topics will include, but not be limited to, dental, dermatology, ENT, and ophthalmology. The schedule is subject to change.
Young Adult Gatherings
Meet other young adults, ages 18-30 to connect. Special events are planned throughout the conference.
Dental Evaluations & Ask the Experts
NFED advisors are on hand to answer your questions or provide you with information to take back to your care providers.
Kays’ Kids Camp And Teens Program
Children age infant – 8th grade. The Teens Program is for high school students (entering 9th grade or above in the fall of 2025). Workshops, arts and crafts, and social time with others affected by ectodermal dysplasias or who have siblings who are. Teens registered for the Teens Program will participate in off-site activities.
Chance Auction
Back by popular demand, the Chance Auction is a fun and exciting way to raise a little money for the NFED. We are looking for donations of items for both children and adults, ranging in price from $1-$30. Drop your items off at Registration on Thursday.
Meals
Thursday, dinner; Friday, breakfast, lunch, and dinner; and Saturday, breakfast and lunch are included with the registration fee. We do our best to accommodate all food allergies, however, there may be instances where it’s not possible to guarantee complete allergen-free preparation due to the nature of the kitchen environment. There will always be some options available to meet requests. All meals are served buffet style.
Transportation Information
A roundtrip airport shuttle is complimentary at scheduled times. Contact the Doubletree by Hilton Bloomington – Minneapolis South for additional information.
Disclaimer
The NFED Family Conference is not intended as a substitute for medical advice. Only a healthcare provider with a full medical history may determine proper treatment options. Opinions shared in the sessions do not necessarily reflect those of the NFED. Conference topics are subject to change.
Family Conference events are subject to change based on local and CDC guidelines. Our number one priority is and always will be the safety of you and your family.
Registration Cancellation Policy
If you register but are unable to attend the Family Conference, the NFED will refund your total conference registration fees, less a $30 administration fee. No refunds will be allowed on or after July 1.
Are you interested in sponsoring the 2025 Family Conference?
Please get in touch with the NFED Director of Development and Communications, Greg Kilmovitz for details and open opportunities.
