Aug. 31, 2015
Posted by Lisa Sencen
NTM Info & Research Inc.’s mission is to save and improve lives through research, education, early detection, and improved treatments for people with pulmonary nontuberculous mycobacterial (NTM) disease.
1.) What does it mean to you personally to be a patient organization serving the rare community?
Our work means building awareness in the medical community, driving research forward and helping patients who face a long uphill battle. It is very gratifying to know the work we do can save lives and give hope to those struggling with rare disease.
2.) What do you find your patient community values most from your organization?
Dealing with rare disease can be a daunting challenge. I think they value the access to information, resources and community support our organization provides through our comprehensive website, patient education pamphlets, social media and access to conferences with experts in the field.
3.) What are some of the challenges your organization has faced?
Fundraising for a rare disease is far more challenging. We encourage patients and family members to talk about how dealing with rare disease has impacted their family and how funding research can change the outcome for so many. Raising public awareness is crucial.
Learn more about what NTM Info & Research Inc. is doing to drive research.
4.) Whats been your most successful awareness campaign and/or fundraising event?
Our annual Friends & Family Holiday Fundraiser has been our most successful to date.
1550 Madruga Avenue
Coral Gables, FL 33146