WashingtonWatch.com - H.R. 2538, The Charles August 'CAL' Long Undiagnosed Diseases Registry Act of 2009

Comment by Kristy (September 29, 2009, 01:00:00)

Tue, 29 Sep 2009 00:00:00 EDT

I have been undiagnosed for 6 years, unable to work, can't get insured, and have been waiting for something like this to come along for a long time now. We desperately need this to be passed so people won't have to live like I have for 6 years. All the waiting and not knowing what's wrong is unbearable. I urge everyone who's gone undiagnosed or knows someone who is still waiting on a diagnosis, to write your congressman and help get this bill passed!! It would be a great asset to people out there like myself, who just want answers!...

Revision by webmaster (September 8, 2009, 01:00:00)

Tue, 08 Sep 2009 00:00:00 EDT

H.R. 2538 would amend the Public Health Service Act to provide for the establishment and maintenance of an undiagnosed diseases registry.

Detailed Summary

Charles August "CAL" Long Undiagnosed Diseases Registry Act of 2009 - Amends the Public Health Service Act to requires the Secretary of Health and Human Services (HHS), acting through the Director of the Centers for Disease Control and Prevention (CDC), to establish and maintain an undiagnosed diseases registry to facilitate the early recognition, prevention, treatment, cure, and control of such diseases. Authorizes the Secretary to make the information in the registry publicly available, except for: (1) individually identifiable information; or (2) trade secrets or commercial or financial information.

Requires such database to be operational one year after enactment of this Act.

Status of the Legislation

Latest Major Action: 5/21/2009: Referred to House committee. Status: Referred to the House Committee on Energy and Commerce.

Points in Favor

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Points Against

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Comment by Hanna (August 17, 2009, 01:00:00)

Mon, 17 Aug 2009 00:00:00 EDT

My Son has no spacific diagnosis for his "syndrome without a name". I can't do much about it. One thing I can do is contribute his information to gather knowledge for the benefit of all. This is a crisis that our babies are forced to bear. It must be documented, if not for my child, then surely for future generations....

Comment by Kay (July 10, 2009, 01:00:00)

Fri, 10 Jul 2009 00:00:00 EDT

Heather - you are truly a testament to, "If Moms ruled the world." I am in awe of your ability to find the strength through your pain & loss to help others. Bless Cal. This database will make a difference. There will be more strength in numbers....

Comment by Tracy (June 28, 2009, 01:00:00)

Sun, 28 Jun 2009 00:00:00 EDT

Working with students with special needs & undiagnosed diseases, I see the suffering they & their families go through. We need this bill to pass for the sake of everyone especially as there are new diseases identified daily. There needs to be a database to search for others with the same symptoms....

Comment by emily (June 26, 2009, 01:00:00)

Fri, 26 Jun 2009 00:00:00 EDT

i love my mom so so much i am so so proud of my mom she rocks...

Comment by Katie (June 4, 2009, 01:00:00)

Thu, 04 Jun 2009 00:00:00 EDT

My daughter was recently diagnosed with a rare disease called Alpers Syndrome. When I researched it, the diagnosis usually comes at the time of the autopsy. This bill will create an Undiagnosed Disease Registry at the Centers for Disease Control (CDC) for maintenance of case records to advance the early detection, prevention, treatment, cure, and control of currently undiagnosed and unregistered diseases. I agree with Vanessa that this will bring closure to the family of the affected and also will help our medical professionals be more knowledgable about the rare diseases out there....

Comment by Uncle Mike (June 3, 2009, 01:00:00)

Wed, 03 Jun 2009 00:00:00 EDT

Heather, I was diagnosed with Perivascular Epithelioid Tumor Cancer. There is no treatment history because, like Cal, it is just too rare to follow cases for a quick diagnosis or cure. I am happy to see that you have gone through your congress people, that's their job, for a bill introduction. It has worked for the American legion because we kept contacting our Senators and Representatives until, most times, a law was passed through all houses. Love you....

Comment by Vanessa Sanchez (May 28, 2009, 01:00:00)

Thu, 28 May 2009 00:00:00 EDT

A long overdue registry and a new tool for medical science. Knowing the etiology of a disease may help prevent it or simplify its treatment. And added bonus: bring closure to the grieving family....

Revision by webmaster (May 22, 2009, 01:00:00)

Fri, 22 May 2009 00:00:00 EDT

H.R. 2538 would amend the Public Health Service Act to provide for the establishment and maintenance of an undiagnosed diseases registry.

Detailed Summary

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Status of the Legislation

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Points in Favor

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Points Against

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Revision by webmaster (May 22, 2009, 01:00:00)

Fri, 22 May 2009 00:00:00 EDT

H.R. 2538 would amend the Public Health Service Act to provide for the establishment and maintenance of an undiagnosed diseases registry.

Detailed Summary

(Log in to edit the wiki and be the first to provide a detailed summary of the bill!)

Status of the Legislation

Latest Major Action: 5/21/2009: Referred to House committee. Status: Referred to the House Committee on Energy and Commerce.

Points in Favor

(Log in to edit the wiki and be the first to show why the bill should pass!)

Points Against

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Status as of May 21, 2009

Thu, 21 May 2009 00:00:00 EDT

5/21/2009: Referred to House committee. Status: Referred to the House Committee on Energy and Commerce.