Africa Foundation For Ectodermal Dysplasia (AFED) is a voluntary, non-profit organization whose mission is to the wellbeing of people living with Ectodermal Dsyplasia in Africa. Ectodermal Dysplasias (EDs) are genetic disorders affecting the development or function of the teeth, hair, nails and sweat glands. Depending on the particular syndrome, ED can also affect the skin, the lens or retina of the eye, parts of the inner ear, the development of fingers and toes, the nerves and other parts of the body.
A BRIEF HISTORY OF OUR ORGANIZATION.
The Africa Foundation for Ectodermal Dyplasia was established in August, 2019 to lend a voice to people living with the rare genetic condition called ectodermal dyplasia in Africa.
We are an Advocacy group that transcends across every social media platform and we aim at embarking on sensitization drives in major outdoor arenas like schools, churches, mosques, motor parks, youth/community outreaches , media houses among other things.
Since the genetic condition is relatively rare and unknown in this part of the world , we are committed to training and retraining our volunteers with the help of seasoned professionals in the medical and advocacy management fields through webinars, seminars and workshops on how to manage people living with ectodermal dysplasia.
So far we have over sixty registered volunteers and advocates who are passionately working to make this dream a reality.
The Africa Foundation for Ectodermal Dyplasia has coordinators from across the African continent and we are still in the business of recruiting more volunteers to aid our cause.
Since we are focused on being the positive change we want to see in the world of every person living with ectodermal dysplasia in Africa, we have started working on dispelling myths, rumours and hearsays surrounding the condition and getting more people and their families to come out and openly talk about their victories, triumphs and challenges. In the nearest future, we hope to have spread the gospel of ectodermal dyplasia around the whole of Africa that no person living with the condition will ever be viewed as a vampire or something from the deities for a sin the victim or parents committed in their past lives.