Forgotten Diseases Research Foundation

About Us

Goals and Mission

The Forgotten Diseases Research Foundation is a 501c(3) non-profit organization. We opened our doors in early 2012. We have a free online tool that will help people get a diagnosis for rare and very rare disesases. You can access it here. The tool is still in beta testing.

Many people with rare diseases are children, and their health problems can affect their growth. In the first part of our project, we're getting anthropometric data (height, weight, head size, etc.) for children of as many different races and ethnicities as possible. We'll use this data in our online tool. In the meantime, we're gathering the data and posting it here. All of our data comes from peer-reviewed papers or government-run studies of growth. We hope that this website will eventually be the most comprehensive repository of anthropometric data in the world. And it's all free.

The information on this site should be useful for pediatricians, endocrinologists, neurologists, and other clinicians interested in growth, as well as researchers, parents, and anyone interested in how people grow.

Please remember, however, that the information presented here can't take the place of advice from a doctor. If you have any questions or concerns about your health or the health of someone in your family, talk to a doctor.

Send Us Your growth Curves or Tables!

If you have growth curves for a country not listed on this site, we'd be thrilled if you could send them to us. We're most interested in official national curves or curves/tables in peer-reviewed papers. Don't worry if the material you send isn't written in English. We speak/read a number of different languages, and we use an online translation tool to help with other languages. We're especially interested in data from sub-Saharan Africa, as it's very hard to find.

If you have any questions or comments about this site or about our foundation, please contact Valerie Natale, our executive director at vnataleATforgottendiseases.org. Feel free to make a donation! Dr. Natale can give you more information about how to donate. All donations to our foundation are tax-deductible. Because we don't accept advertisements or charge for access to any of the information we provide, we need your help.

Privacy Policy

The Forgotten Diseases Research Foundation respects your privacy. We will not save or view any information you enter into the head circumference calculator on this site. Furthermore, if you contact us or provide your name and contact information for any reason, we will not sell them or otherwise share them. Similarly, we do not view or save any information you enter into our diagnosis assistant tool.

This website uses Google Analytics to analyze the audience of the site and improve its content. Click here to learn more about the principles of privacy and security of Google Analytics and the various measures taken to ensure the protection of your data.

Funding

The Forgotten Diseases Research Foundation is funded by public donations and by a grant from the Harry L. Willett Foundation.





 

Page last modified on 18 March 2017.