National Neurological Conditions Surveillance System (NNCSS)
Millions of people of all ages across the United States face the substantial and sometimes devastating consequences of neurological disorders and conditions.
CDC - Centers for Disease Control and Prevention
Patient Organizations Voice Their Views on the Priorities of an FDA Office of Patient Affairs (OPA)
Report to the US Food and Drug Administration on a National Survey of Patient Organizations.
Submitted by Rx4good
Click here to view the Survey Report
Click here to view the Letter to the FDA Office of Patient Affairs
Ensuring Access to Quality Complex Rehabilitation Technology Act
We’ve come a long way on an important federal bill that would help people with progressive MS and we can’t stop now!
MS activists have helped gain significant congressional support for a bill that helps people with MS access complex rehabilitation technology through Medicare—which are individually customized products including manual and power wheelchairs and seating and positioning systems. These products not only meet the medical needs of people with progressive MS—but allow them to remain independent and active members of their community.
Since MS activists first started educating Capitol Hill about the importance of this bill at the Public Policy Conference in March, more than 90 members of Congress have joined as cosponsors. Your member(s) of Congress is one of these supporters and can help push this bill over the finish line. Email your member(s) of Congress today to thank them for their support and ask them to urge committee leadership to advance this bill. Congress will only be in session for a brief time after the election, so they need to hear from you now and make passing the Ensuring Access to Quality Complex Rehabilitation Technology Act a priority!
Click here to contact your U.S. Senator
Click here to contact your U.S. Representative
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Affordable Care Act: State-by State Insurance Information for State Health Exchanges—Important Resources for Clinicians and Patients
The National Organization for Rare Disorders (NORD) recently launched a webpage that provides state-by-state insurance information, that includes details of the benefits covered in each state’s insurance marketplace, outlines the essential health benefits that each state must provide, and offers links to important websites and resources for questions. As enrollment in the state health exchanges begins on October 1st, the webpage offers robust and detailed information that will assist individuals in understanding their current health plan and/or buying a new plan. Clinicians may access the webpage to gain greater understanding of covered services and restrictions. [More…]
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