In May I had the honor of representing the NFED at the 6th International Conference on Ectodermal Dysplasias. This conference was held in breathtaking Oslo, Norway on May 27-30. The sessions were both a wonderful opportunity to learn, and a way to network with experts on ectodermal dysplasias from around the world. There were 101 participants from fifteen different countries present.
The agenda covered topics such as early diagnosis techniques; fascinating that soon physicians will be able to diagnose simply from a facial photo! Many of you participated in the groundwork for this research at our National Family Conferences. Thank you! We couldn’t do this without your help, willingness and dedication.
Neil Kirby gave an update on the EDI200 research. Big progress has been made. Did you know that ten babies have participated in this research? Amazing! These families are paving the way for potential treatments for XLHED. We learned about dermatologic and dental challenges faced by individuals who are affected, and about the quality of life issues. Very interesting!
Two presenters discussed the importance of telling your children early on that they are affected by ectodermal dysplasias. I think the bottom line was to be honest and open about the syndrome so that they wouldn’t feel shame or feel badly, which could happen if they found out later in life, or perhaps from someone else.
I had the pleasure of opening this amazing conference with a tribute to our dear friend Dr. Salinas, who passed away in February. I also presented the results of the women’s survey and information on the importance of accurately classifying the syndromes.
Following the meetings, all of the group leaders met to discuss other very important issues such as fundraising, cooling products, sustainability and many other topics. Leaders from Germany, Australia, Great Britain, Russia, Norway, Spain, Austria, Sweden, France, Italy, The Netherlands, and the USA gathered to discuss how best to meet the needs of individuals affected by ectodermal dysplasias and how to engage our families to contribute to these efforts.
It was a lovely trip. A bit rainy, but a great trip! A lot of learning and sharing as well as a little time for fun!
Mary Fete, M.S.M., R.N., C.C.M, is the Executive Director of the National Foundation for Ectodermal Dysplasias.