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Phone: 800-821-7356
1737 King Street
Ste 600

Alexandria
Virginia 22314
USA
Website
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Target demographics: Adults and children -- patients, family members, and caregivers. Medical and therapeutic professionals who work with these patients.

Direct beneficiaries per year: 3,000 patients who are TMA members and 1100 physicians treating myositis patients

Someone who had 3 hours of volunteer time could: Volunteers could help with an awareness event, assist with mailings, or support a fundraising event.

Geographic areas served: Primarily North America with some partners in Europe and Australia

Programs: Education
The Annual Conference brings together myositis patients with health professionals who specialize in myositis and related fields. This event features a panel of medical experts and sessions on treatments, promising research, coping strategies, exercise techniques, and more. Find presentations from previous Conferences.

TMA publications —both in print and electronic—present information on diagnosis, treatments, research news, and other relevant topics that help patients and caregivers learn what they need to address their individual health care concerns.

Support
Support groups offer members the chance to share their feelings and discuss their concerns with people in similar situations. These groups encourage an atmosphere of communication and compassion.

Advocacy
Public recognition of myositis, increased research funding, greater access to care, and better coverage and reimbursement for treatments—TMA gives you the tools to make a difference.

Research
TMA provides funding to emerging and established researchers who are seeking answers to the mysteries surrounding myositis. TMA is committed to continuing its research program to increase understanding, find better treatments and, ultimately, a cure.

Mission:
The mission of the Myositis Association is to:

- Provide support to myositis patients and their families
- Provide connections between the Medical Advisory Board and the general medical and patient communities
- Increase funding to support myositis research
Results:
There is greater awareness of the disease among physicians; there is better understanding among physicians about how to treat the disease; there are new treatments for the disease that did not exist before; there are research trials underway to find better treatments; TMA has funded 35 research projects related to myositis in the past 10 years

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06/26/13
My wife suffers from Inclusion Body Myositis (IBM). Through membership in TMA and in our local support group we have learned so much about this rare disease that we had never heard of prior to her diagnosis. As a volunteer member of the TMA board of directors I am aware of how the scarce resources ... more »
06/09/13
I was diagnosed with inclusion body myositis (IBM) five years ago. It took almost two years to obtain a correct diagnosis, because it is such a rare disease, and the average practitioner does not come across it. The Myositis Association (TMA) is the only credible organization in the country that ... more »
05/08/13
I have had Myositis for over 14 years. About 8 years a go was diagnosed with IBM. Without the help and support of TMA I believe our disease would be in the dark ages in terms of knowledge and research. In addition to being a patient, I am also active as a fund raiser and support group leader. ... more »
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