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Nonprofit Overview

Causes: Diseases of Specific Organs, Diseases of Specific Organs Research, Health, Health Support

Mission: The national psoriasis foundation provides people with psoriasis and psoriatic arthritis the services they need to best manage their condition, while promoting research to find a cure.

Programs: Research and professional educationdirectly supporting sixteen promising early-stage research and emerging researchers through our discovery and translational grants. Awarded eleven medical research fellowships designed to increase the number of physician researchers investigating psoriatic diseases, leading to more discoveries, better treatments and ultimately, a cure. More than $13 million has been committed to research since our inception. Hosted professional education for medical professionals and dermatology residents to learn about the latest advancements in treatments and the management of psoriasis. Promoted patient involvement in research studies and clinical trials. Continue to maintain the national psoriasis victor henschel biobank, aiding in the search for specific genes that cause psoriasis and psoriatic arthritis. Published psoriasis forum, a peer-reviewed medical journal to provide rheumatologists, dermatologists and other medical professionals with the latest research and treatment information. Lead discussions with health policy and regulatory groups to improve health outcomes measures and remove barriers to care.

advocacythe foundations advocacy priorities are focused on strategies that promote federal research efforts and ensure individuals living with psoriatic diseases have fair and affordable access to needed treatments. Harnessing the collective efforts of tens of thousands of advocates, the psoriasis foundation worked to: make insurance more fair and affordable and help improve coverage for people with psoriatic disease, help set public health policy for psoriasis and psoriatic arthritis through the findings from data collection at the centers for disease control (cdc), worked to improve the safety and affordability of psoriasis and psoriatic arthritis treatments, and increase federal funding for psoriasis and psoriatic arthritis research in order to find better treatments and a cure.

education, outreach and patient servicespublished information on living well with psoriatic diseases, as well as the latest science and treatment updates for some 198,000 readers of psoriasis advance magazine and other print publications. Provided comprehensive resources at www. Psoriasis. Org and other sites for more than 4. 15 million visitors. Sent educational e-newsletters to more than 270,000 subscribers. Hosted 25 more than skin deep and six be joint smart educational events attracting more than 1,470 participants.

Community Stories

1 Story from Volunteers, Donors & Supporters

2

Donor

Rating: 1

Based on my experience, I would encourage people who value their privacy, who do not want their names and phone numbers given to drug companies without their permission, who do not want to be asked highly invasive, intrusive personal questions about their psoriasis by a stranger over the phone -- including whether or not they have psoriasis on their genitals and if it affects their sex lives -- to run as fast as they can from the National Psoriasis Foundation.

I received a phone call from a stranger out of state who said he was doing a survey. He asked if I have psoriasis, and I asked how he got my name and phone number. He replied “through random calls to people throughout the United States.” I asked who he was with and he said he would reveal that *only* if I completed the survey.

I believed, from the nature of the questions, that the survey was by a pharmaceutical company seeking information to market its psoriatic drugs. I repeatedly asked if this was the case, but the surveyor would only answer that I had to complete the survey to find out who was behind it.

After a while, the questions got intensely personal -- however, I was determined to find out how the caller got my name and phone number and who sponsored the survey, and the only way to do that was by continuing to answer the questions.

I was asked if I have psoriasis on my genitals and to rate it on a scale of 1 to 5. I was asked if the psoriasis on my genitals interfered with my sex life and again -- rate it on a scale of 1 to 5.

The survey took 45 minutes to 1 hour. After it was finally over, I was told that the survey was by Celgene -- a pharmaceutical company. I had never heard of Celgene and asked the surveyor to spell the company's name.

It didn’t take much detective work to discover that Celgene got my name and phone number from the National Psoriasis Foundation (not through random calls to people throughout the US, as I was told by the surveyor).

I called the NPF and was not allowed to talk to anyone, other than the receptionist, and she would not deviate from a prepared script except to say that every year there are angry phone calls from members regarding the survey. That's right, the NPF surveys its members every year and disregards the anger it generates. The prepared script from which she read said the NPF cannot afford to survey its members so it uses another company to do so (never mentioning Celgene by name).

A month ago, I wrote a letter to the president and CEO of the NPF, Randy Beranek, and cc’d Richard Seiden, Chairman of the Board, about my concerns with the NPF/Celgene survey. My letter was polite and thoughtful. Neither responded.

I see that the NPF does not have a “donor policy” on Charity Navigator. However, I found a privacy policy online that states “The National Psoriasis Foundation, like many other nonprofit organizations, occasionally makes available only our constituents' names and postal addresses to companies, predominantly other nonprofit organizations."
http://www.psoriasis.org/about-us/legal/privacy-policy

In my opinion, the survey violated this policy because 1.) my name and *phone number* were provided to Celgene by the NPF and 2.) Celgene is decidedly *not* a nonprofit, but instead seeks to make millions, perhaps billions of dollars off my disease.

I am sickened that the organization would, in my opinion violate my membership and trust. Now that my name and phone number and highly personal, intrusive information about my disease (and sex life) has been gathered by the NPF and Celgene and is sitting in their data bases, it can be used in ways in which I have no control. Who is to say it won’t be posted on the Internet? Or that I won’t be harassed with more invasive phone calls from NPF/Celgene?

Frankly, I don’t believe the NPF when it says it couldn’t afford to survey its members, so it used another organization (the never-mentioned drug company Celgene) to do so. NPF is, in my opinion, awash in money. Here is a link of NPF sponsors and donations, including the drug companies that fund the NPF: http://www.psoriasis.org/sponsors/our-sponsors

I worry, too about children targeted in surveys. According to its website, the NPF surveys children and, judging by what I was asked, I wonder if inappropriate questions are directed at them. As with adults, the parents of these children most likely have no control as to how the information gathered is used, along with their childrens' names and phone numbers.

I question NPF citing a lack of funds for farming out the survey to Celgene. According to the BBB’s Give.org., CEO Beranek's salary was $127,128 as of June, 2009. It jumped to $235,080 in June, 2011. Why did he receive a $107,952 raise in two years if the organization can't even fund a survey? Why does the NPF survey members every year? Why aren't the surveys anonymous?

Finally, I would like to ask Mr. Beranek and Mr. Seiden if they have genital psoriasis and whether or not it interferes with their sex lives. And please rate the severity of your genital psoriasis on a scale of 1 to 5 and indicate, using the same scale, how much it impacts your sex life. Since the NPF and Celgene believe they need to know this information of me, I would like Mr. Beranek and Mr. Seiden to be forthcoming, too.

Review from CharityNavigator