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Old Tue Mar 6, 2018, 05:06 PM
Susan Susan is offline
Join Date: Sep 2003
Location: Chicago, Il
Posts: 101
Patient Services Inc (PSI) & Fellow Patients Need Our Help!

From Patient Services Inc, (PSI) which is a key advocacy group for rare disease patients and provides patient financial assistance. I received this letter today.

As you may have seen in the press or on our Facebook page, PSI recently took the necessary step of suing the U.S. Department of Health and Human Services for unconstitutionally restricting our ability to help patients.

In a nutshell, the government imposed rules on PSI in March of 2017, which do not allow us to ask for important information from our donors and potential donors - information that is critical to establish patinet assistance programs to help our patients.

These rules, which violate our First Amendment Rights have already contributed to hurting our work. The restrictions placed upon communication between donors/potential donors with charities has contributed to a 17% drop in donations. This means our 2018 is down from 2017, not allowing us to help 2,500 patients, who otherwise would have been able to recieve assistance. In addition, six patient assistance programs we have set up have gone unfunded and there may be possible cutbacks to assistance amounts for patients.

More than ever we need your help, and that means telling your story. Your voice can make a difference and help save charities! Tell us what PSI has meant for you, your family and your friends.

You Can Do This By:

1. Writing your story and emailing it to PSIDevelopment@uneedpsi.org
2. Posting your story to PSI's Facebook page @PSI4Patients
3. Posting a video of you sharing your story to PSI's Facebook page or
emailing it directly to PSIDevelopment@uneedpsi.org
4. Joining the PSI Patient Coalition to help us advocate for your rights!
Contact PSIAdvocacy@uneedpsi.org to join.
5. Emailing us at PSIDevelopment@uneedpsi.org to let us know if you'd be
willing to speak with the media about the importance of Charities.

The world needs to know how central our assistance has been to your life so we can continue getting the donations we need to help so many in need. The world needs to know that our government is creating barriers to patient assistance when no logical alternative exists.

Thank you in advance for lending your voice to this cause and for your dedication to ensuring that PSI can continue helping those who need assistance most.

* If you don't get help from a patient charity such as PSI or NORD yourself, several of our member friends do. You can write on behalf of a friend/friends.
AA/PNH Dx 1998, Warfarin, Soliris
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