Supportive Tips and Resources

As we mentioned on the main page of this website, we are in this together. Dealing with a chronic, possibly progressive, illness requires a team of people. THe most important thing to know is that there are people and resources available to help support you and your caregivers through this journey. Talk to your provider about meeting with a social worker or getting connected with our palliative care colleagues. 

Below are some tips and resources to get you started.

Support Groups 

Support groups play a vital role in the lives of people with ILD, as well as their caregivers and loved ones:

  • They help people learn all about ILD and its treatments through expert speakers, webinars, or other resources
  • They help people learn to live with ILD through members’ sharing of information and experiences 
  • They are a place where patients and caregivers can get emotional support from others who are also on the journey.  
  • They are a place where those affected by ILD find reassurance that they are not alone.

The UCSF ILD Program has a long-standing support group for people and caregivers affected by ILD called Living Well with ILD.  Click here to learn more about this group.

Go here to find local face-to-face PF support groups, online support groups, and even a telephone support group for people with ILD. 

If you are interested in starting an ILD support group in your area, go to the PFF Support Group Network to learn how the PFF can support you.