You are here



The EDNF 2014 Annual Learning Conference will be held at the Hilton Americas Hotel in Houston, TX, from July 10-12!  Discover Houston today!



Registration is now closed.  Registration will be available onsite.

Please note your full conference registration includes your Friday and Saturday lunch tickets, as well as your Saturday evening banquet ticket.  A one-day Friday registration will include your Friday lunch ticket, and a one-day Saturday registration will include your Saturday lunch and evening banquet ticket.  A Kids & Teens registration will also include a Friday and Saturday lunch ticket, as well as a Saturday evening banquet ticket.

Take Me Out to the Ballgame!

Join your friends, family, and fellow zebras for an evening of fun at the ballpark!  On Friday, July 11th, the Houston Astros will play the Boston Red Sox at Minute Made Park at 7:10pm.  A limited number of seats have been reserved together on the Terrace Deck level of the stadium.  The ballpark is approximately one mile from the Hilton Americas.  (Click here for transportation information.)
We have no more tickets available.  Tickets can be picked up at the EDNF registration desk before 6:00pm on Friday, July 11th. Tickets will not be sold at the registration desk.

Conference Schedule

We are thrilled to announce the following speakers for the 2014 Learning Conference:
*Subject to Change

Sam Bailey, MS, CGC
John Belmont, MD, PhD
Lara Bloom
Mary Boisen
Henry Burkholder, MD

Heather Butler-Pierce
Thomas Cleveland
Heidi Collins, MD
Sean Craig, PhD
Shweta Dhar, MD, MS, FACMG
Howard Epps, MD
​William Ericson, MD
Clair Francomano, MD
Rodney Grahame, CBE, MD, FRCP, FACP
Erin Grigsby
Fraser Henderson, MD
Glenda Holt
​Barb Kielaszek
Diana Lebron, MD
​Brendan Lee, MD, PhD
Anne Maitland, MD, PhD
​Troy Mason
Tricia McDaniel
John Mitakides, DDS, FAACP
Shaine Morris, MD, MPH
Diane Murrell
Kendra Neilsen Myles
Derek Neilson, MD
Donna Olivero, PT
Jonathan Parr, PT
Alan Pocinki, MD
Manu Sood, MD
Brad Tinkle, MD, PhD
Shani Weber

Please note that the speakers listed are subject to change.  

Thursday will consist of Physician Consultations beginning at 12:30pm, a Special Presentation by Dr. Brendan Lee at 4pm and a Welcome Reception at 5pm.  All conference attendees are welcome to join Dr. Lee's presentation and the Welcome Reception.  Friday and Saturday will consist of educational sessions, lunch, and conclude with Saturday night's Banquet Dinner.

Click here to view our Schedule of Events!

Kids & Teens Program

This year's Kids & Teens program will serve children and teens ages 5-15 years old. The EDNF Learning Conference will provide developmental curriculum, activities, games, and educational sessions with doctors and other related speakers. While we will focus on encouraging the children, teens and students to gain a deeper understanding of EDS, we will also provide opportunities for them to have fun, and gain some deeper relationships with children and teens from all over the country! A strong focus this year will be about inspiring a better future with greater possibilities.

The 2014 Learning conference will offer a new track of sessions with focus on teens and young adults. These sessions will provide a comfortable environment for young adults to meet with doctors and other inspirational individuals while they get to know one another in a more personal setting. We will also have a teen/young adult lounge where they can relax, play some games and work on other activities at their leisure.

View the Kids Schedule (ages 5-11) here.
View the Teens Schedule (ages 12-15) here.

We hope to see you at the conference! Please feel free to reach out to Kate Gilbert at with any questions, comments, or concerns. 

Silent Auction

Learn more about donating to the EDNF 2014 Silent Auction here.

Hotel Information

Hilton Americas Hotel
1600 Lamar Street

Houston, TX 77010

The EDNF Discounted Room Rate for the Hilton Americas Hotel is $160.00 per night plus tax.  Discounted Room Rate available until Wednesday, June 18, 2014 or until the block is filled.  Please call 1-800-HILTON and request the EDNF room block or mention our unique group code: 1ED. Additionally, you can make your discounted reservation online! Click here to book your discounted room. Please do not delay in making your reservation! ADA King, as well as two bed ADA Queen Rooms, refrigerators, and down alternative pillows are available on a first come first serve basis. Please contact the hotel to make a special request. 


Travel Information

The largest Houston airport is Bush Intercontinental Airport (IAHC) it is approximately 20 miles from the Hilton Americas hotel. Hobby Airport (HOU) services domestic flights and is approximately 10 miles from the Hilton Americas hotel. Both airports have SuperShuttle options, EDNF has a discounted rate for the shuttle, please click here to book your discounted airport shuttle. For additional travel information visit Houston Travel Tools & Info or Things to do in Houston.

Sponsorship/Exhibitor Opportunities

Interested in sponsorship or exhibit opportunities?  Review our 2014 Annual Learning Conference Prospectus and contact Anita Parker, Senior Director of Resource Development, for more information.


In compliance with ADA regulations, EDNF will take all reasonable steps to ensure that registered attendees are given equal and reasonable opportunity to participate in the program offered by EDNF. If you have a special request, please call our office to discuss accommodations at 703-506-2892.

Registration Cancelation Policy

All cancelation requests must be received by the EDNF Headquarters on or before Tuesday, June 10, 2014, and will result in a refund of fees less a $50 processing fee.  There will be no refunds for cancelations received after Tuesday, June 10, 2014.  Cancelation requests may be made via phone (703.506.2892) or e-mail (  


Thank You to our 2014 Learning Conference Sponsors

Gold Sponsor


Silver Sponsor

Silver Ring Splint

YouScript by Genelex

Bronze Sponsor

Friend of EDNF

Purdue Pharma L.P.

Creating Knowledge
Building Community
Promoting Change