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Review for American Porphyria Foundation, Western Sprgs, IL, USA

Rating: 4 stars  

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 necessary to get diagnosed. I spent a lot of time and money in the process but getting a reputable diagnosis was very important to me . . . Plus I wanted to know what I actually had. The foundation has worked to increase testing accuracy, identify good labs and support genetic research. The advice on the website is clear and despite a cost (usually under $500) you can find out if you have the disease or not. I read the reviews and saw complaints about the cost of diagnosis. Think about the time you miss from work, unproductive doctor visits and the sheer mental effort wasted to complain instead of advocating for yourself or loved ones. Direct you anger and efforts toward something positive. No other foundation or group representing the porphyrias has the technical information, international contacts, political contacts and resources necessary to advocate for patients effectively. I am thankful everyday for the medical professionals I worked to assemble for my care and the APF for helping me through the process. I cannot speak to the effectiveness of their Facebook site . . . If someone is looking for information concerning their health on a social media site rather than looking at the literature on the APF site and consulting with your medical professionals about your specific case--let's just say that mass media is not the forum where I want to get my medical information. As far as I am concerned this is a solid organization trying to help as many people as they can.

How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?


How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?


Role:  Client Served & I am a patient with AIP.