Forgotten Diseases Research Foundation

Welcome to the FDRF

Rare Diseases

We've developed a free online tool to help diagnose rare diseases. You can access a beta version of it here.

Our tool uses a new method for helping match a set of signs and symptoms to a disease. We've also written extensive information about each disease in the tool (see 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 make a diagnosis.

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.

New study of ataxia-telangiectasia (A-T)!

The FDRF has been collaborating on a project aimed at making growth curves for children with the classic form of A-T. We're working with the A-T Clinical Center at Johns Hopkins University Hospital and Professor Tim Cole of the University of London. Preliminary work on the curves is done and we are in the process of assembling the curves and readying a paper for publication.

We're also working with A-T Clinical Center at Johns Hopkins on a natural history of A-T 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.

Check back here for updates.

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.

 
Page last modified on 22 January 2019.