Winter 2012 MGFA’s 2012 Annual Conference Bally’s in Las Vegas is the site for the 2012 Annual Conference on April 25-27. Please visit www.myasthenia.org for conference registration and hotel reservation details!
MG Walk The 2012 MG Walk locations are Tallahassee, Jacksonville, Orlando, St. Petersburg/Tampa, and Boca Raton, Florida; New Orleans, LA; Las Vegas, NV; Philadelphia, PA; New York, NY; Columbus, OH; East and West Michigan; Milwaukee, WI; Phoenix, AZ; Seattle, WA; Los Angeles and San Francisco, CA; Boston, MA; and the Virtual Walk. Plan to walk with us in 2012! For information on dates for each location, how to register, volunteer or donate, go to www.mgwalk.org or call 1-855-MGWALKS.
International MG Conference The 12th annual International Conference on Myasthenia Gravis and Related Disorders will be held in New York City on May 21 – 23. It is a conference dedicated to the diagnosis and treatment of myasthenia gravis (MG) including clinical and translational immunology and neuroscience topics related to myasthenia gravis and other neuromuscular and autoimmune disorders. For more information go to http://www.myasthenia.org/HealthProfessionals/InternationalSymposium.aspx
Patients needed for Thymectomy Study The National Institute of Neurological Disorders and Stroke (NINDS) is funding a phase 3 trial of the surgical procedure known as a thymectomy — removal of the thymus— in an estimated 150 adults with myasthenia gravis (MG) at 50 sites throughout the United States and other countries. Currently, almost 120 patients have been enrolled worldwide, but more patients are needed to complete the study. Recruitment will continue through November 2012. For details about participating and contact information, see Thymectomy Trial in Non-Thymomatous Myasthenia Gravis Patients Receiving Prednisone Therapy; or enter NCT00294658 into the search box at ClinicalTrials.gov. You may also contact Greg Minisman at the study's coordinating center (UAB) at (205) 934-4905. Rare Disease Day and Patient Advocacy Day February 29, 2012 is the 5th annual Global Rare Disease Day. The National Organization for Rare Disorders (NORD) is the U.S. sponsor for this global event. Visit the Rare Disease Day USA website to learn about activities across the U.S. and the Global Rare Disease Day website to see what’s happening all over the world. MGFA is one of the Rare Disease Day Partners supporting this event.
The Food and Drug Administration (FDA) will host a special Patient Advocacy Day on March 1, 2012 to celebrate Rare Disease Day, in conjunction with NORD and the Genetic Alliance. The purpose is to engage and educate the patient community about FDA’s roles and responsibilities in the development of products (drugs, biological products and devices) for the diagnosis, prevention, and/or treatment of rare diseases or conditions and how patient organizations may become involved. A live and interactive simultaneous webcast will be available for patient advocates unable to attend the day-long event, which will take place at FDA's campus in Silver Spring, MD. More information and registration.
The National Institutes of Health (NIH) also will celebrate Rare Disease Day on February 29 with a day-long celebration and recognition of the various rare diseases research activities supported by the NIH Office of Rare Diseases Research, the NIH Clinical Center, other NIH Institutes and Centers; the Food and Drug Administration’s Office of Orphan Product Development; the National Organization for Rare Disorders; and the Genetic Alliance.
U.S. Department of Health and Human Services (HHS)
Essential Health Benefits: HHS Informational Bulletin On December 16, 2011, HHS issued a bulletin outlining proposed policies that will give states more flexibility and freedom to implement the Affordable Care Act. The bulletin describes the proposal and informs the public about the approach that HHS intends to pursue in defining essential health benefits through rulemaking. For a fact sheet, visit: http://www.healthcare.gov/news/factsheets/2011/12/essential-health-benefits12162011a.html Holding insurers accountable for premium hikes Using its “rate review” authority from the Affordable Care Act, HHS determined that health insurance premium increases in five states (Alabama, Arizona, Pennsylvania, Virginia, and Wyoming) were “unreasonable.” After independent expert review, HHS determined that Trustmark Life Insurance Company had proposed unreasonable health insurance premium increases in these states, potentially affecting nearly 10,000 residents. For more information go to http://www.hhs.gov/news/press/2012pres/01/20120112a.html
Disability.gov
Disability.gov is the federal government website for comprehensive information on disability programs and services in communities nationwide. The site links to more than 14,000 resources from federal, state and local government agencies; academic institutions; and nonprofit organizations. You can find answers to questions about everything from Social Security and employment to affordable and accessible housing.
New information is added daily across 10 main subject areas – Benefits, Civil Rights, Community Life, Education, Emergency Preparedness, Employment, Health, Housing, Technology and Transportation.
National Health Council (NHC) The National Health Council, of which MGFA is member, is leading patient advocacy organization support for legislation that focuses on Modernizing Our Drug & Diagnostics Evaluation and Regulatory Network. The legislation, known also as the MODDERN Cures Act, will speed up the development of new and better treatments for patients with chronic diseases and disabilities by encouraging the development of drugs to treat conditions with few or no medical options; increasing the number of tools that can predict which patients will receive the most benefit from particular medicines; and giving patients quicker access to new diagnostic tests once they are approved by the Food and Drug Administration. Myasthenia Gravis Foundation of America, Inc. 355 Lexington A, 15th Floor | New York, NY 10017 ph: (212) 297-2156 or (800) 541-5454 | fax: (212) 370-9047 office@myasthenia.org | www.myasthenia.org