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AMERICAN PORPHYRIA FOUNDATION
August 19, 2012

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.

The Great!

I've personally experienced the results of this organization in...

i received help from porphyria experts (after I worked to get a diagnosis) and appreciate the lobbying efforts of the organization to ensure patients continue to have access to drugs and treatment.

Ways to make it better...

If I had to make changes to this organization, I would...

I would like to see more local area involvement (large metro areas) for patient support . . . More story sharing and community building. However, I understand this is a rare disease and the population may not be sufficient to create such groups. Also, there is a lot of confusion between those who feel like they have porphyria and those of us with a confirmed diagnosis.

More feedback

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

A lot

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

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

MY ROLE:
Client Served & I am a patient with AIP.