Welcome to the FDRF
Rare Diseases
We've developed free online tools to help understand rare diseases. See the link at the top of this page for our newest tool or the Rare Diseases tab for more information.
We've also written extensive information about each disease in the tool (see the Rare Diseases tab). All of our web pages for different diseases have photographs of patients, X-rays, and other images that will help a person trying to understand the condition.
We also provide free information about child growth. We have a large collection of growth charts from countries around the world (including charts for growth in different diseases).
The Forgotten Diseases Research Foundation is a 501(c)3 nonprofit organization. We're a small organization and any donation would be greatly appreciated and would be used to improve our diagnosis tool.
Growth in ataxia-telangiectasia (A-T)
The FDRF, in collaboration with the A-T Clinical Center at Johns Hopkins University, has completed a study of growth in ataxia-telangiectasia. The study has been published in the Orphanet Journal of Rare diseases (link at right under Publications). As part of the study, we made growth charts for A-T. You can access them here.
We're also working with A-T Clinical Center at Johns Hopkins on a natural history of A-T project. The FDRF and the Clinical Center recently received funding from the NIH for this project. The goal of this research is to classify A-T into severity groups, which will help with the organization of clinical trials. We're also trying to find patterns in clinical data that will help us understand how A-T develops and how it progresses. This work is being funded by a grant from the A-T Children's Project.
International Growth Charts
Children from different places or of different ethnicities grow differently - sometimes very differently. If you've moved to a new country, the local growth charts may not make accurate assessments about your child.
Our collection of global growth charts currently has charts from 25 countries from all over the world. We have charts for Asians, Africans, Europeans, Indians, North Americans, South Americans, and others. We also have charts for Down syndrome and Cri du Chat syndrome.
