The Myositis Association Takes the Lead in Rare Disease in Virtual Community Building and Empowering the Patient through Telemedicine

News provided by

May 05, 2020, 12:34 ET

ALEXANDRIA, Va., May 5, 2020 /PRNewswire/ -- May is Myositis Awareness Month and The Myositis Association (TMA), which serves over 75,000 people across the United States living with myositis, a rare autoimmune muscle degenerative condition, is taking the lead in virtual education and empowering the patient in telemedicine.

Even before the news of the Coronavirus hit the US, TMA had been planning its Inaugural International Virtual Summit to kick off this year's Myositis Awareness Month as a way to help patients better manage their myositis disease. Each year, TMA hosts an in-person annual patient conference that provides patients with access to the leading myositis experts, support of peers living with myositis, and the most up-to date research in the field.

"We recognized that not everyone could travel to our in-person meetings due to physical, financial or time limitations and we heard from the community that 12-months was a long time to have to wait to have the opportunity to connect with others who have similar experiences," says Mary McGowan, TMA's Executive Director. "So, we started researching new and innovative ways to supplement our in-person program. Who knew, this would be the fate of many programs in 2020. Since we were way ahead in our planning and development, many other organizations have reached out to us, to ask advice on identifying a platform, planning a virtual event, and finding ways to make the event meaningful for the community. TMA is proud that we are able to use our newly developing and creative skills to other patient advocacy organizations as they try to navigate this new and challenging landscape at this time."

The Myositis Association would like to extend our sincerest gratitude to the sponsors who have made this event possible. We would like to extend a special thank you to our Platinum Sponsor, Mallinckrodt Pharmaceuticals and our Gold Sponsors, Boehringer Ingelheim, Kezar Life Sciences, and Octapharma for helping TMA to bring our community together over through this virtual platform.

Also, as part of Myositis Awareness month TMA is working on programming and tools to help to empower the patient in management and understanding of their disease and condition, which is vitally important especially in this time of telemedicine.

Patients already have limited time with their providers, but with telemedicine, patients need to become more keenly aware and have a better understanding of what is happening with their own body and mind, need to be organized and structured in preparing for their telemedicine appointment with their providers, as there is the potential of competing distractions.

Throughout Myositis Awareness Month, TMA will be launching an awareness campaign including a patient empowerment tool called "My Myositis Tracker." Throughout the month, TMA will provide tips and tricks for symptom awareness, tracking and follow-up, through a comprehensive national social media campaign.

TMA's Myositis Awareness Month initiatives include:

May 14 3:00pm ET –	Webinar introducing the "My Myositis Tracker" with Dr. Tom Lloyd, Associate Professor of Neurology and Neuroscience, Co-Director of the Johns Hopkins Myositis Center and Researcher Chair, of TMA's Medical Advisory Board.

May 20 12:00pm ET –	Twitter chat, led by Dr. Rohit Aggarwal, Associate Professor of Medicine, Medical Director, Arthritis and Autoimmunity Center, University of Pittsburgh, and Chair of TMA's Medical Advisory Board on empowering the patient in the digital age. This will twitter discussion lead by Dr. Aggarwal on behalf of TMA we will discuss tools for staying educated, finding support, preparing for virtual appointments, and coordinating care.

May 28 4:00 pm ET –	Telemedicine is it right for the Myositis Community. Join Dr. Namita Goyal, Associate Clinical Professor, Director Neuromuscular Medicine Fellowship Program, Department of Neurology, University of California Irvine, Dr. Tahseen Mozaffar, Professor of Neurology, Orthopedic Surgery and Pathology and Interim Chair of the Department of Neurology at University of California, and Dr. Lisa Christopher-Stine, Associate Professor of Medicine and Neurology and the Director of the Johns Hopkins Myositis Center for a webinar on what has worked and what are the limitations of telemedicine.

"Empowering the patient to have a better understanding of their symptoms and changes in their condition, can help lead to much more dynamic and fruitful dialogue on disease management between the physician and their patient," says Dr. Rohit Aggarwal, Associate Professor of Medicine at University of Pittsburgh School of Medicine and Chair of TMA's Medical Advisory Board. "This cutting-edge campaign is critically important for patients and clinicians, especially during this time of telemedicine when patient care is moving to the virtual environment."

About Myositis

Myositis is a rare autoimmune disease of the muscles that causes muscle damage and chronic disability. With severe weakness, pain, fatigue, debilitating skin rashes, and other often life-threatening symptoms, patients find it difficult to perform even simple day-to-day activities, including walking, climbing stairs, and raising their arms to comb their hair.

Myositis has several forms, including dermatomyositis, polymyositis, inclusion body myositis, necrotizing myopathy, and juvenile forms of the disease. Patients may also face other life-threatening disorders, such as interstitial lung disease, antisynthetase syndrome, difficulty swallowing, and a higher risk of cancer and other diseases. There is no cure.

About The Myositis Association (TMA)

The Myositis Association is the leading international nonprofit organization committed to the global community of people living with myositis, their care partners, family members, and the medical community. TMA has provided over $7 million to help advance the field of myositis research and TMA provides patient education and support, advocacy, and physician education. To learn more about myositis go to www.myositis.org.

SOURCE The Myositis Association