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This page is in English just because we would like to reach far beyond our small hackerspace or even the dutch hacker community.

On June 28, Jeannie Ng visited the space during the bi-weekly Metameet. She told us of a project she is doing.

Setting up a community for people with rare diseases

Jeannie's goal is to help people suffering from rare diseases or even those suffering from inexplainable pains. She wishes to build a communication platform that enables these people to communicate with each other across the world. Such a network would not only enable people to share their story but could possibly help people to diagnose common symptoms, share household remedies or even form a lobby towards research, institutions and governments. Jeannie has been spending her own money and time on this project. And you can help, too!


The PDF linked below is Jeannie's description of the project for which she has asked our help. The build of a website has already been commissioned but since she is unfamiliar with website design, coding and security she would like someone to review the work. Familiarity with databases and Ruby on Rails is a pro.

How to help

The least we can do, whether we can code or not, is spread her request for help. So that's what we are doing.

We would kindly ask those who are willing and able to help directly to contact Jeannie through the mail address in the PDF. We'd like everyone else to spread the word, the PDF or even the link to this site to anyone who might be able to help in any way possible. We strongly believe Jeannie's sincerity in building this website and community. We would not have published this request otherwise. Please do not turn this message into the next internet hoax, do not forward the request to everyone in your contact list but to those people you think may be able to help only. On the other hand we would kindly ask you to spread the word by all means possible. We'd like as many (potentially helpful) eyeballs as possible to see it. Do, please, repost this message on journals, in relevant communities or forums, hackerspaces' mailing lists. Twitter it. Blog about it.


Again if you think you can lend a hand, do contact Jeannie. All details are in the PDF.

Click here to download and open the PDF.