Updated: June 16, 2020
We are excited to announce our webinar series for 2020: Conference from your Couch! Join us on the second Wednesday of every other month in 2020 at 7 p.m. central for FREE webinars to learn more about ectodermal dysplasias, symptoms, treatments and research.
Learn from our experts and submit your own questions. Each webinar will last up to one hour. You will need to register for each webinar in advance in order to participate.
In addition to the educational webinars below, we have added four new webinars for July. These syndrome specific webinars are designed to provide support. They will be led by families and be discussion-based. Learn more here.
Here’s the schedule:
How to File Your Ectodermal Dysplasia Insurance Claims Like a Pro
Wednesday, February 12
Presenters – Sarah Briggs, Ozark Prosthodontics
Sarah Briggs shares how their dental office submits dental claims for their patients who are affected by ectodermal dysplasias. Pick up tips and information to share with your providers or to use if you submit your dental claims yourself. Feel free to share with your dental providers.
Find Answers to Your Most Pressing Health Concerns Caused by Ectodermal Dysplasias
Wednesday, April 8
Presenters – Clayton Butcher, MD, University of Missouri and Timothy J. Fete, MD, MPH, Retired, University of Missouri Health Care
Dr. Butcher and Dr. Fete will answer questions that families have raised about their most pressing health concerns. They will present information about health issues facing both kids and adults affected by ectodermal dysplasia. You will also be able to submit questions in the webinar for the doctors to answer.
If you head to our Facebook groups, you will find a poll where you can post questions you would like them to answer in this webinar.
How to Treat Nasal Rocks, Ear Wax and Other ENT Issues
Wednesday, June 10
Presenter – Brandon Hopkins, M.D., Cleveland Clinic Head and Neck Institute
Does your child have problems with smelly nasal discharge? Have you noticed that ear wax accumulation is affecting your hearing? Dr. Hopkins, a pediatric otolaryngologist, will present information on the different ways that ectodermal dysplasias can affect the nose, ears and throat. Tune in to hear suggestions for all ages on how to treat those concerns.
Ectodermal Dysplasias 101: Learn About Different Types and How They Can Affect Your Body
Wednesday, August 12
Presenter – Timothy J. Fete, M.D., M.P.H., Retired, University of Missouri
If you or your loved one who have a new ectodermal diagnosis or if you have been looking to better understand your condition, this is the webinar for you. This month, we will replay a popular webinar from pediatrician Dr. Tim Fete. He gives a comprehensive overview of the 100+ ectodermal dysplasias. He discusses everything from cooling, immune function, allergies and speech to ear, nose and throat issues, growth, nutrition, and more.
Learn How New XLHED Clinical Trial Could Affect Future Generations of Your Family
Wednesday, October 14
Presenter – Caroline Durand and Agnes Jaulent, Ph.D., espeRare
Agnes Jaulent will share the latest information on developing a pre-natal treatment for the symptoms of x-linked hypohidrotic ectodermal dysplasia (XLHED). EspeRare plans to launch a clinical trial in Europe and then the United States to confirm preliminary findings from Dr. Holm Schneider’s Trial to Cure.
Ectodermal Dysplasia: How to Treat Your Skin, Hair and Nail Symptoms
Wednesday, December 9
Presenter – Alana Bree, M.D., F.A.A., A Children’s House for Pediatric Dermatology,
No matter what type of ectodermal dysplasia affects your family, you likely have some type of issue with your skin, hair, nails or sweat glands. Maybe even all of the above! This month, we will replay a popular webinar from pediatric dermatologist Dr. Alanna Bree. She presents extensive information on how the skin, hair and nails are affected the ectodermal dysplasias. She also gives suggestions for specific products.
Registration will open for each webinar approximately one month before. Watch your email for registration information for each webinar. You can also check back to the attend an event section of our website for details on how to register for each webinar.
We hope you learn from our experts in this webinar series and enjoy Conference from your Couch! If you have any questions, contact Kelley at Kelley@nfed.org or 618-566-2020.
Disclaimer: The webinar series is not intended as a substitute for medical advice. Only a healthcare provider with a full medical history may determine the proper treatment options. Opinions shared do not necessarily reflect those of the NFED. Topics, speakers and dates are subject to change.