Support Groups

The ILD Collaborative currently runs a monthly face-to-face support group for pulmonary fibrosis patients in the Boston area. Our support group provides patients and caregivers living with pulmonary fibrosis a place to forge personal connections, to support each other and to share their experiences managing their disease. Each month we have a speaker on a topic relevant to pulmonary fibrosis with goal to provide information about important medical issues, as well as issues shaping patients’ quality of life. The remainder of the meeting is a time to connect with, and ask questions of, others living with the disease. These meetings are open to patients from any care center, and are accessible through web audio and video cast. Slide decks from speaker presentations and handouts are then available on our website for remote review. Patient-generated comments are shared through our support group active email campaigns.

The ILD Collaborative also works with patients and providers to catalyze the formation of local support groups throughout New England in communities that wish to be connected to our monthly support group in Boston, but where patients and families are not always able to travel to attend in person. In addition to sponsoring and establishing local monthly meetings catering to each community, patients and families in the newly formed groups are also able to participate remotely into our Boston meetings, and along with members of our Boston support group, help prioritize topics and questions to be discussed. This allows patients and their families to both find and support others in their very local area, and to benefit from a larger urban center’s resources.

If you are intersted in starting a support group in your local area, please submit the form below, and we will collaborate with you on creating it.