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H.R. 2538, The Charles August 'CAL' Long Undiagnosed Diseases Registry Act of 2009 (8 comments ↓)
H.R. 2538 would amend the Public Health Service Act to provide for the establishment and maintenance of an undiagnosed diseases registry.
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Visitor Comments
Vanessa Sanchez
May 28, 2009, 11:48am (report abuse)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.
Uncle Mike
June 3, 2009, 9:03pm (report abuse)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.
Katie
June 4, 2009, 11:47am (report abuse)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.
emily
June 26, 2009, 8:10am (report abuse)i love my mom so so much i am so so proud of my mom she rocks
Tracy
June 28, 2009, 2:29pm (report abuse)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.
Kay
July 10, 2009, 7:27pm (report abuse)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.
Hanna
August 17, 2009, 8:55am (report abuse)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.
Kristy
September 29, 2009, 6:42am (report abuse)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!