The original CAH message board was on the popular "Inside the Web" message boards. In 1998 Danny Carlton, who has two children with CAH, approached the family then running it, about helping out. They asked if he could take it over and he agreed. Concerned about privacy as well as security, Mr. Carlton moved the board to his own site, and eventually purchased the domain CongenitalAdrenalHyperplasia.org to be the permanent home of the board, and to offer additional information and services to the worldwide CAH community.
The site has remained active since then and has had two redesigns and one rebuild. It is in desparate need of another rebuild as 13 years has brought a tremendous amount of new technology as well as application of various social networking systems.
What is planned is to incorporate the current and archived posts into a more extensive social networking platform. Attention to privacy and security is also important.
The proposed changes include...
• Converting the message storage from file based to mysql based storage
• A new design
• A member system for profiles, avatars, individualized settings and email alerts
• Ajax based message entry system for quicker response.
• Automated archiving of older message and threads
• Personal messaging system for private conversations
• Media uploading for images and videos
• A "like" function for posted information, messages and comments
Additionally, the core social networking platform developed through this rebuild will become the foundation for the RareDisease.org project.
RareDisease.org is dedicated to creating connections between people impacted by a rare disease. Because of the rarity of these conditions it is often hard if not impossible to locate others sharing the same experiences in order to network with information, support, encouragement and understanding. RareDisease.org tries to offer help to those people too often left out of the mainstream health support networks.