Helpful Facts

Care and Resources

When you or your loved one receive a pulmonary fibrosis diagnosis, it can be a confusing and overwhelming time. Given the rarity of the disease and the unknowns, finding appropriate care and resources can be difficult.

The following includes further information on providers in Pennsylvania as well as helpful resources about the various treatment options your doctor may speak to you about.

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Find the Appropriate Care

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Pulmonary Fibrosis Foundation Care Center Network

The Pulmonary Fibrosis Foundation (PFF) has assembled a lists of medical centers with specific expertise in the treatment of pulmonary fibrosis (PF). As part of that commitment, the Foundation has worked with the medical community to establish the PFF Care Center Network. This program allows people with PF to find experienced PF medical professionals and additional support services.

PFF Care Center Network

Oxygen, Transplant, and Clinical Trials

Information and Resources

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Oxygen Therapy Information and Resources

Oxygen therapy or supplemental oxygen is often recommended by medical providers in the treatment of pulmonary fibrosis. Each patient’s needs are unique—some require oxygen all day long, others may only need it at certain times of the day or when exercising. According to the Pulmonary Fibrosis Foundation, oxygen therapy is prescribed when oxygen levels go below 88%. As with any of your treatment options, you should consult your health care provider. Below are some helpful resources about oxygen therapy:

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Lung Transplant Information

At some point during your treatment and disease progression, your health care provider may discuss with you lung transplantation. Lung transplant can extend life expectancy and lead to better quality of life. However, it is a major surgery so will likely not be the first option discussed during your treatment. Depending on your prognosis and where you are at in your disease progression, the following are some helpful resources that may aid your conversation with your health care provider about lung transplantation:

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Clinical Trial Information

Clinical trials are performed to test the safety and effectiveness of experimental treatments for disease treatment. Many organizations offer information on what clinical trials entail as well as information on trials you may wish to become involved in. As always, consult your physician to see if a clinical trial is right for you.
Further information and resources from the Pulmonary Fibrosis Foundation are below:

Organizations

Other Helpful Resources

Its mission is to provide support, education, advocacy, and resources for patients living with Idiopathic Pulmonary Fibrosis (IPF) as well as their care partners and families, in order to sustain the highest possible quality of life.

Its mission is to act as the trusted resource for all who are affected by this disease: patients, care partners, and providers. In addition to this, the foundation provides information on ways to manage your health, find medical care, and helpful resources on managing life with PF.

The membership consists of more than 16,000 specialists whose mission is to improve health worldwide by advancing research, clinical care, and public health in respiratory disease, critical illness, and sleep disorders. They have developed many patient-focused resources, fact sheets, as well as information on oxygen therapy and managing the (ICU).

This Foundation supports clinical research, community service, and patient education. As the patient-focused philanthropic arm for the American College of Chest Physicians, it provides millions of dollars in grants for clinical research studies, community outreach events and collaborates with physicians to create comprehensive patient-education tools including information and resources specific to PF.

The American Lung Association is working to save lives by improving lung health and preventing lung disease through education, advocacy, and research. The association provides information and resources by type of lung disease including ILD and PF/IPF.

An international support group for patients with pulmonary fibrosis (PF) and other forms of interstitial lung disease (ILD) and their family members and caregivers. The group’s goal is to provide education, inspiration, and support to members and to each other. Efforts are supported by a team of world-renowned pulmonologists and research scientists who work tirelessly to advance the field of lung disease.

Resources

For Patients and Providers

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The Pulmonary Fibrosis Foundation Health Provider Resources

Many resources exist on the Pulmonary Fibrosis Foundation’s Health Provider Resources page that link health-care professionals to important, up-to-date information, grants, guides, fact sheets, and more. Additional information from the PFF can be found on the Medical Community Research and Resources page.

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Patient Guide

Download our patient guide.

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Provider Checklist

Download our provider checklist.

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Patient Checklist

Download our patient checklist.

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Clinical Trials

A list of ongoing clinical trials about IPF can be found on clinicaltrials.gov.

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Listen to our IPF podcast series