*Hello,* ** *I just received this notification from NORD and thought that it might also be helpful for people here at the TMIC List.* ** *Grace*
---------- Forwarded message ---------- From: "NORD" <[EMAIL PROTECTED]> Date: Nov 16, 4:46 pm Subject: Social Security and Rare Diseases To: Devic's support DATE: November 16, 2007 TO: Rare Disease Patient Organizations FROM: NORD We are forwarding an email to you that was sent to NORD by the Social Security Administration. It is notification of hearings that will take place in Washington DC in early December regarding Social Security and rare diseases. Specifically, the purpose of these hearings is to investigate problems currently being encountered by people with rare diseases who apply for Social Securitiy assistance and to investigate possible ways to reduce unnecessary delays and difficulties. The hearings are being sponsored by the Social Security Administration and its Commissioner, Michael Astrue. Mr. Astrue spoke at NORD's Annual Conference in September. Diane Dorman of NORD will testify at the hearings. If you have information you would like to share with her regarding problems encountered by your patients or families related to Social Security, please contact her soon [EMAIL PROTECTED] In addition, there will be a small number of seats at the hearings that will be made available on a first-come, first-served basis. Organizations interested in sending someone to the hearings will be allowed to send just one person. Also, those who go to the hearings will need to pay their own travel or other expenses. Please be aware, too, that it is possible to participate by phone. See details below. If you would like to attend the hearings or participate by phone, respond directly to the Social Security Administration, as outlined below: -------------------------------------------------------------------------------------------------------------- On December 5th, 2007, the U.S. Social Security Administration (SSA) is holding a Compassionate Allowance Outreach Hearing on Rare Diseases in Washington, DC. SSA's Compassionate Allowance initiative is designed to quickly identify diseases and other medical conditions that invariably qualify under SSA's Disability Listings of Impairments based on minimal objective medical information. The outreach hearing on rare diseases is being convened by Michael J. Astrue, Commissioner of Social Security.You canread more about Compassionate Allowances and the outreach hearing in the Federal Register notices linked here. The Social Security Administration is pleased to extend a formal invitation to attend the hearing to sixty (60) persons associated with NORDin the DC area. Attendance at the hearing is by invitation, only. Since seating space is limited, if you would like to attend, please RSVP to [EMAIL PROTECTED] by Close of Business (COB) Tuesday, November 27 , 2007. Information about directions and parking can also be found above. PLEASE DO NOT RESPOND TO NORD The Social Security Administration can accommodate the first 60 persons responding to this email on a first come first served basis. Please provide one RSVP per person. In your response, please provide your full name and contact information. By Friday, November 30, 2007, the Social Security Administration will let you know whether or not they can accommodate your request to attend the hearing. This response will be sent via e-mail. Important Information WHAT: Social Security Administration, Compassionate Allowaces Outreach Hearing on Rare Diseases WHERE:Main Hearing Room, International Trade Commission, 500 E St SW, Washington, DC 20436 WHEN:Wednesday, December 5th, 2007, from 8:45am - 5:30pm How do I [EMAIL PROTECTED] Close of Business,Tuesday, November 27, 2007.You should receive a response by Friday, November 30th. May I call in, insteadof attending?YES!! Telephone lines will also be available for the public to listen in. However, SSA needs to know how many lines to reserve. Please RSVP [EMAIL PROTECTED] November 21, 2007. If you want toattend in person, but will phone in if audience space is full, please indicate that in youre-mail. How do I get there?Directions from the Metro, and a list of local parking garages and lots are attached. If you plan on driving, you should be able to easily find directions online using the address above. Compassionate Allowance Hearing Meeting Notice.pdf 68KDownload Compassionate Allowance ANPRM.pdf 75KDownload Directions and Parking Info.doc 56KDownload
