Forgotten Diseases Research Foundation

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.

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. The manuscript is in near-final form and growth curves should appear on this site by the end of July 2020.

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 21 July 2020.