By Becky Abbott As a member of the ectodermal dysplasia community, it has been frustrating, to say the least, having to deal with insurance, human resource administration, and politicians. We have submitted claims to insurance, had them denied, submitted again, denied again and been through the vicious circle so many times that we didn’t know where to…
Greetings from the NFED
Happy Spring! Or, at least we hope it arrives soon. What’s going on at the NFED? Needless to say, we are busy, busy, busy! I would like to share with you our progress towards our goals and other activities. Family Conference We are in full gear preparing for a great Family Conference in St. Louis,…
It's Time For a Change: Advocating for Children with Rare Diseases
By Becky Abbott I’m frustrated and sometimes angry. I’m angry not only as a parent, but as a member of the rare disease community. Our journey started like so many other families who have children with rare diseases. It took several years, many doctor appointments and documenting symptoms. Finally, after being referred to a pediatric…
Geismar Family Gives Back with Annual Halloween Bash
By Alice Geismar Seventeen years ago this November, my husband, Bruce and I were awaiting the birth of our second grandchild. Our first grandson, Jack was almost two and we were enlisted to watch him while Ruth and Keith went to the hospital. It was immediately apparent that Ryan had serious problems. He looked like…
NFED Families on Capitol Hill
By Marc Steingesser NFED Liaison On Tuesday, September 29th, I represented the NFED on Capitol Hill along with Jeanne Wang and her son, Nollan, and Kristin Matus-Kelso and her daughter, Ally. We joined other rare skin disorder advocates and members from the American Academy of Dermatology (AAD) to share our concerns and issues with members…
A Lighthouse to Guide our Lifeboat
By Jenny Steele Three years ago, we heard the term ectodermal dysplasia for the first time. An internet search introduced us to the NFED. With a few clicks of the mouse, we found a wealth of information and a community of people who understood what we were facing. The NFED family would become a lighthouse…
Volunteering for the NFED is My Opportunity to Give Back
By David Sanmiguel The NFED has been a very important part of my family’s life, since the day my daughters were diagnosed. The moment my family and I became members of this great organization we only received good things, along with a warm welcome, understanding, help, information and great times. Simply put, everything has been wonderful. Our…
Thoughts from the International Conference on Ectodermal Dysplasias
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…