Welcome To Kaitlynn's Place

Kaitlynn was born September 29th, 2004. We have seen neurology specialists from St. Louis to New Orleans since she was born. Unfortunately, we still do not have a definitive diagnosis for Kaitlynn. The best guess her doctors have to offer is mitochondrial disease.

FDA Will Hold Public Hearing on Review and Regulation of Products for Rare Diseases

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On June 29th and June 30th, 2010 The Food and drug Administration (FDA) will hold a public hearing on the regulation of drugs, biologics, and devices for the treatment and diagnosis of rare diseases. The hearing will be held on both dates from 9 a.m. to 5 p.m. at 10903 New Hampshire Avenue, Building 31, Room 1503, Silver Spring, Maryland. There is not a charge to attend, but seating will be on a first-come basis. 

The FDA is seeking to acquire input from healthcare providers, academic researchers, patients, family of patients, patient advocates, pharmaceutical industry, and the healthcare industry to help carve the FDA’s future path related to rare diseases. All of these groups will be given an opportunity to relate their experience, concerns , and suggestions related to  the way the FDA regulates the scientific evaluation, marketing authorization, surveillance, etc.. of products for rare diseases.

The National Organization for Rare Disorders (NORD), one of the leading organizations dedicated to helping people with rare "orphan" diseases, announced that they will have a representative to speak at the meeting. If you would like to speak or submit a written comment via NORD, you can contact Diane Dorman @ ddorman@rarediseases.org

Otherwise, you can contact The FDA for questions about how to make an oral presentation or written submission here- Paras M. Patel, Food and Drug Administration, 10903 New Hampshire Avenue, Building 32, Room 5271, Silver Spring, MD 20993-0002; telephone: 301 796-8660; fax: 301 847 8621; OPDAR@fda.hhs.gov. You must register if you want to be heard! If you just want to attend, then you do not have to register.

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