CAL Undiagnosed Diseases Research & Collaboration Network Act of 2013 (HR 1591)
Currently, it takes an average of five to seven years to be diagnosed with a rare disease. Without a
diagnosis there is no hope for treatment. For some patients the disease will take their lives before they
receive diagnosis. HR 1591 will help reduce the length of time and number of physicians it currently takes
to diagnose patients with a rare disease by creating a professional physician collaboration network and
providing a means to collect and analyze information on undiagnosed cases. Please co-sponsor HR 1591
to help improve diagnosis and give patients an opportunity to seek treatment.
Rare Disease Legislative Advocates (RDLA) is a collaborative organization designed to support the advocacy of
all rare disease groups. RDLA works to empower the individual to become an advocate by providing
informational meetings, legislative resources, advocacy tools, and special events that support organizations and
advocates working to promote rare disease legislation. RDLA’s objective is to grow the patient advocacy
community and work collectively to ensure that the many voices of patients with rare diseases have an opportunity
to be heard on Capitol Hill.
Contact: Julia Jenkins, Executive Director, (202) 803-6047 or Julia@RareAdvocates.org
The CAL Undiagnosed Diseases Research & Collaboration Network Act 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 no registry that helps physicians and
researchers diagnose and treat those with unexplained conditions.
HR 2591, would:
 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 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
The bill was named after Cal Long, who died from an undiagnosed disease when he was only five
years old. During his life, Cal developed many unexplained medical problems such as neurological
difficulties, cerebral atrophy, severe headaches, uncontrolled vomiting, and seizures. Young Cal
eventually lost the ability to walk. Cal’s family visited several specialists and had countless tests run
in the hopes of finding a diagnosis. They were often told what the disease was not, but were never
given an actual diagnosis. As they watched their son dying, the unimaginable pain was worsened by
the fact that they did not know what was killing him.
750 9th Street NW Suite 750 • Washington • DC 20001
www.RareAdvocates.org
The bill was created with
Disease Control and the National
collaboration from the Center for
Institutes of Health.
Sponsor: Rep. Carter, John R. [R-TX-31]
Cosponsors:
Rep. Burgess, Michael C. [R-TX-26]
Rep. Speier, Jackie [D-CA-14]
Rep. King, Peter T. [R-NY-2]
Rep. McCaul, Michael T. [R-TX-10]
Rep. Rangel, Charles B. [D-NY-13]
Rep. Welch, Peter [D-VT-At Large]
Rep. Bilirakis, Gus M. [R-FL-12]
Rep. Gingrey, Phil [R-GA-11]
750 9th Street NW Suite 750 • Washington • DC 20001
www.RareAdvocates.org