As you know, in 2016 the National Foundation for Ectodermal Dysplasias (NFED) community is celebrating our 35 anniversary! This year, we celebrate 35 years of NFED success. Over the years we have added tremendously to the body of knowledge of ectodermal dysplasias, made great strides in treatment and have had tremendous research successes.
Thirty-five years ago there was not much known about ectodermal dysplasias not to mention how to manage the symptoms. Today, genes have been identified for many of the syndromes, syndromes have been characterized and we know how to manage the various symptoms.
Our success is a result of a visionary founder, a committed and supportive NFED family (YOU!) and very dedicated staff over the years. We have been blessed along the way with great leadership from our Board of Directors, Scientific Advisory and Patient Care Councils. We are very grateful to all of these individuals who so generously share their time and expertise with us.
Most importantly, we have only been successful because of YOU, our NFED family. Your love and support has driven us to great strides. It is only because of your generous donations, both in terms of money and your precious gift of time that we are standing stronger than ever after 35 years.
Your donations, whether big or small, have ignited the Research Program and fueled our Treatment and Support Programs. Because of your generosity we have helped more than 7,500 in the U.S. and worldwide by providing comprehensive services with loving care to individuals affected by ectodermal dysplasias and their families; helping individuals and families benefit from early diagnosis and care; and spearheading research to ultimately develop cures.
Your volunteer hours have helped us hold 35 National Family Conferences and numerous Regional Family Conferences. You have spent countless hours writing content and sharing your family’s stories so others can learn from you. You have participated in research so we can find answers to your questions. The list goes on and on! We are very grateful for your love and support throughout our 35 years of success.
In November, we will launch a new website as an anniversary gift to you. This website is going to be awesome! It will be comprehensive, user-friendly, fun and happy. You will also be able to access this website on your mobile devices and tablets.
We have been working countless hours to develop new and fresh content and to be sure this new website is designed in the best possible way. We are beyond excited to launch this new website to better serve the needs of our community.
Stay tuned. It is coming soon!
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Congratulations on the 35 anniversary,my name is Lori,I have Ectodermal Dysplasia and I’m glad they discovered this disease.I felt alone and depressed feeling like I am a freak.I thought no one ever had this but me I’m older know and I’ve notice problems which I feel could be from the ED.I don’t know for sure cause I don’t know anyone else my age with ED It would be nice to chat with others with this.Is there a website that allows you to chat with people with ED?