PrimordialDwarfism.com

Welcome to PrimordialDwarfism.com, a site dedicated to educating and supporting families affected by Primordial Dwarfism.

First, a definition...

Primordial Dwarfism is a category of disorders with many subtypes. Its definition is vague but basically means that these children are profoundly growth delayed for their gestational age before birth and at birth .There may be several links to why this occurs.

Some of these subtypes are:

The pictures above were taken at the 2000 Annual Convention of Little People of America (LPA) in Minneapolis, MN. Dr. Charles Scott (seated, center) of the DuPont Hospital for Children, chaired a group session that represents possibly the largest gathering in history of people diagnosed with a rare form of Primordial Dwarfism. More information about primordial dwarfism and other skeletal dysplasias can be found at the Nemours website at http://www.nemours.org/skeletaldysplasia.

The picture below was taken at a the 2006 National Convention of Little People of America, in Seattle, WA, where a remarkable total of 24 children and young adults with Primordial Dwarfism attended the conference, and they are pictured here along with some parents and medical staff.

Our mission statement is:

To improve the quality of daily living for our children. To provide both a professional and personal support system for our families and to always remember this is not about or because of our children but for our children. (Because of the lack of information and documented cases families are being misinformed concerning prognosis, quality of life and just what to expect.) We will pioneer this project in hopes to make a better world for our families and those to come.

Also, please visit the website of the Potentials Foundation, a non-profit organization dedicated to assisting families affected by Primordial Dwarfism. The foundation has done a wonderful job helping several families with all kinds of issues, from attending LPA Conventions to receiving Medical diagnosis and care. They are a great resource for information, assistance and reaching out to the families of children with Primordial Dwarfism. If you are interested in making a contribution to assist these children, there is information on the website about how you can make a tax-deductible contribution.