Monday, September 19, 2011

Why We Need Your HELP NOW!

We are in need of your participation to help save the life saving medications for all Porphyria Types.
We may be shy, we may not want anyone to know we have a rare disease, but if you or someone you love or know has Porphyria and needs medication, what would happen if it was not available any more?  What would you do?  Coould you do anything?  We need people to open up, step up and share your story on how Porphyria has affected you personally, as a family member but most importantly if you have taken these orphan drugs we need you to write to your Congress men/women, email them, call them, write them to make this bill 340b come alive to see the need that they need to make a change and why.

Please really think about this and act quickly time is running out!  For more details contact:
www.porphyriafoundation.com or call 866-apf-3635.

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