NTM Info & Research (NTMir) a national organization formed on behalf of patients with pulmonary nontuberculous mycobacterial (NTM) disease will hold its first national advocacy and education event in Washington, DC February 8-10, 2006. The event will be held at Capitol Hill Suites with events on Wednesday and Thursday evenings at 6 pm. NTM are bacteria found widely in water and soil, that can cause severe, progressive lung damage.
NTM patients from across the country, accompanied by leading physicians, will meet with 31 members of Congress, or their professional staff, to advance support at a national level for patients with NTM diseases. NTMir has previously secured language amendments in the fiscal 2006 budget year requesting that federal agencies address issues of epidemiology and treatment of this devastating infectious lung disease that apparently affects more women than men.
NTMir has helped countless patients navigate the complexities they encounter during diagnosis and treatment of NTM diseases. NTMir has garnered broad support in the patient and professional communities. The organization has received its 501(c)3 not for profit designation, has a board of distinguished physicians from leading research institutions, and established the acclaimed Web site, www.ntminfo.org that generated over 2 million hits from across the globe in its first three years. The site hosts a patient support board, and ten independent support groups. Plans to launch a first international group in Toronto, Canada will be released shortly.
NTM Info & Research has assumed a leading role in the support of patient advocacy and medical research. Patients and physicians have worked in partnership to advance the cause of countless patients suffering with NTM disease.
This year, NTMir will launch the first group in a series of Continuing Medical Education programs in five cities. NTMir will continue to work with NIH and CDC on the implementation of research programs, and with a consortium of leading hospitals to develop multi-center trials. The NTMir web site, in cooperation with the University of California San Diego, has just launched a patient survey to gain data for a better understanding of how NTM affects patients.
NTMir has provided hope for patients, encouragement for physicians and will continue to pursue an inclusive organization model as the challenges of NTM lung disease are met.
For more information please contact:
Philip Leitman
President, NTMir
1550 Madruga Ave., SUITE 230
Coral Gables, Fl 33143
philipleitman@aol.com
305-667-6461x12
305-773-8846 cell
Miriam O'Day
Sr. Director Public Policy
miriam.oday@verizon.net
202-246-1231