Please join us in support of this mission to develop a database for undiagnosed diseases! Many of our own children and families have been searching for a diagnosis for several years to no avail.  Giving physicians the ability to search a national registry to help diagnose their patients would be tremendously helpful to all of the families on the journey to diagnosis.  The waiting for answers and not knowing what a child’s future holds is tormenting for so many.  This tool would be a GREAT advancement in the handling of cases of individuals searching for a diagnosis.  Unfortunately, this cannot be implemented without YOUR HELP!

Below is a summary of the bill along with an update about where this bill currently stands. Please contact your U.S. Representative and pass this on to your friends and family and ask them to do the same!


Congressman John Carter (R-TX31) reintroduced the Charles August Long Undiagnosed Diseases Research and Collaboration Network Act of 2013 to Congress Wednesday, April 17. It has also been co-sponsored by other members of the House of Representatives; Charles Rangel (D-NY13), Peter King (R-NY2), Michael Burgess (R-TX26), Michael McCaul (R-TX10), and Jackie Speier (D-CA14).

The bill, HR 1591, would help individuals and military Service Members and Veterans who have unexplained symptoms and medical problems by establishing an undiagnosed diseases registry. Currently there is not a registry that helps physicians and researchers diagnose and treat those with unexplained conditions. It would also:

• provide physicians who are handling undiagnosed cases to search for similar cases and to network with other physicians handling similar cases in order to find a diagnosis
• enable physicians to cross reference undiagnosed diseases with other common diseases and rare diseases to help find a diagnosis, identify similar findings and potential treatments.
• help physicians and researchers describe prevalence of cases of undiagnosed diseases throughout the United States while making necessary data available, such as environmental, generic and occupational factors, that are associated with undiagnosed diseases.
• help physicians and researchers better outline demographic factors of individuals who are undiagnosed.

Please Contact your U.S. Representative and ask them to co-sponsor this bill!!



CALs Bill has been introduced into the House for the 3rd time. In order for it to get out of the sub committee where it has died the previous years we need at least 100 House Representatives to sign on as co sponsors. The House Reps will not see Cal’s Bill unless their constituents contact them and ask them to sign on and co sponsor.This is where the MEN, WOMEN, VETERANS and CHILDREN like my SON, CAL who are suffering from an UNDIAGNOSED disease/disorder need everyone’s help.Please CALL AND EMAIL your State Representatives in the U.S. House of Representatives. Tell them who you are and where you are from and that you support HR 1591 THE CHARLES AUGUST LONG UNDIAGNOSED DISEASES RESEARCH & COLLABORATION NETWORK ACT OF 2013 (
and you are a voting constituent and that want them to show their support by signing on as a Co Sponsor.If you send an email also include a question that requires a specific response…..something that when they respond to you they will have to answer so that they cannot just send out a generic email. Calling is great too! You will likely get an assistant but the faster we flood those lines the faster they take action!! Here is a link where you can find the contact information for your House Rep!!!

Finally, please comment below with your City,State & Representative’s name.We would like to keep track of what areas & Representatives we have covered. Please ask your friends and Family to help too!!!