Our Children


     Surrounding the question for children undiagnosed

 

Home     About Us     Connect     Our Children     Support Cause     Diagnosis Search

The CAL Undiagnosed Diseases Research
 and Collaboration Act of 2011"


Previously known as
The Charles August 'CAL' Long
Undiagnosed Diseases Registry Act of 2011

Syndromes Without A Name USA
Supports this bill

Through the dedication of a mother, Heather Long, who lost her child to an undiagnosed disease. A bill will be introduced to create an Undiagnosed Disease Registry.

These are some key facts about the proposed bill. To learn more about the bill visit the links to the right.

  • The Secretary, through the Director of NIH shall establish and maintain a undiagnosed disease registry.

  • Allowing physicians to search similar conditions and collaborate with other physicians handling similar cases
  • Better enable cross-disease research to cross reference the undiagnosed diseases to common and rare disease.
  • Better describe the types and prevalence of undiagnosed disease cases
  • Make necessary data available to elucidate appropriate factors
  • Better outline key demographic factors
  • Better understand the length of time for a diagnosis to be rendered.
  • Improve access to programs such as the Undiagnosed Disease Program
  • Expansion of such Undiagnosed Disease Program, throughout the United States
  • Establishment by other entities of undiagnosed disease programs of like scope and nature to the Undiagnosed Disease Program through the NIH.
  • Information available to appropriate health care professionals, patients, and other qualified individuals and organizations.

  • No identifiable information with be available.

Links

MEDICAL DISCLAIMER - SWAN USA offers the information on this Web site for general educational purposes only. This information should not be used for diagnosis, nor should it be considered a replacement for consultation with a healthcare professional. If you have questions or concerns about your health, please contact your healthcare provider.

Copyright � 2006-2011 Syndromes Without A Name USA, All Rights Reserved
1745 Lorna Ln, Otsego 49078
Phone: (269) 692-2090 Toll Free (888) 880-7926