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 CS, TTD, and A-T!

We're trying to find ways to improve how CS and TTD are managed. To do this, we need to understand how medical events (even small ones) that happen early in a child's life affect him or her later. For example, does better nutrition affect growth? Do young children whose weight is good have fewer problems or milder problems when they're older? Do they live longer? Are there any common patterns between two or more diseases?

To find patterns, we need lots of data from blood tests, growth charts, scans, hearing exams, etc. We need to put data from lots of kids together then analyze it all to look for patterns. To do this, we need medical records. We're hoping that what we learn from this study will be meaningful for patients today.

For more information and consent forms, please visit out CS, TTD, and A-T project page.

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 15 June 2017.