I got a letter from CAF (Cooleys Anemia Foundation) and think it would be valuable if some of our members could provide their input. I have heard a lot of patients having problems because L1 is not available in the US, so here is a chance. Quote from the letter I received.
On Tuesday, October 6 from 8 am to 4 pm, the US Food and Drug Administration (FDA) will hold a meeting to assess the New Drug Application (NDA) for Ferriprox, the oral iron chelator that is often referred to as L1 or deferiprone.
Patients and parents have an opportunity to express their views to the FDA.
If you would like to present your support for Ferriprox and help to ensure the availability of another chelating option for patients, CAF is urging to either submit a letter of support or travel to Maryland to attend the hearing and testify in person.
Written letters, essays or expressions of support must be submitted to
Nicole Vesely
Center for Drug Evaluation and Research (HFD21),
Food and Drug Administration,
5600 Fisher Lane,
Rockville,
MD 20857
Email : nicole.vesely@fda.hhs.gov
Deadline for written submission is September 21, 2009If you have further questions, please contact cooleys anemia.