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AMERICAN PORPHYRIA FOUNDATION Overview
PORPHYRIA EDUCATION AND RESEARCH - DISSEMINATION OF INFORMATION TO THOUSANDS OF INDIVIDUALS AFFECTED BY PORPHYRIA AND GRANTS TO PHYSICIANS FOR RESEARCH
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I am dismayed by the fact there seems to be so much negativity surrounding this foundation. The disease is bad enough that one should not undermine the groups trying to support our mutual cause. I see a lot of complaints about getting a diagnosis. The APF was very clear on the process and tests ...
The APF is an outstanding organization. When I needed , they were on the spot. They returned my call promptly and sent copious information to me and my doctor. I live on a small income and told them that I could not donate. They placed me on the member list anyway and have NEVER asked me for ...
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One of the most important things the APF does is the fundraising it does to provide younger doctors with the opportunities and training to become the next porphyria specialists. Grants can be difficult to obtain in regards to rare disease-- especially when it comes to developing and advocating new ...
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