We know that life with IPF requires support. So we created some tools to help you better manage some of the challenges that IPF brings. Explore available resources below.

Personalized Doctor Discussion Guide Icon

Personalized Doctor Discussion Guide

Create a personalized discussion guide to help you start a conversation with your doctor about whether or not you could be suffering from IPF.


Pulmonologist Locator Icon

Pulmonologist Locator

Use our locator tool to find a pulmonologist in your area.

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IPF & You logo IPF & You logo

With the IPFandYou™ Call Center, you can call 1-844-473-2638 to speak with one of our dedicated nurses who specializes in idiopathic pulmonary fibrosis (IPF) and other respiratory issues. IPF may affect you differently at different points, and our nurses are here to answer questions and help guide you along the way.

With the IPFandYou™ Call Center, you can call 1-844-473-2638 to speak with one of our dedicated nurses who specializes in idiopathic pulmonary fibrosis (IPF) and other respiratory issues. IPF may affect you differently at different points, and our nurses are here to answer questions and help guide you along the way.

Personalized Support Is One Phone Call Away

You can also opt in to get support based on your own IPF needs, sign up to receive educational material, and get connected with additional services to help you better manage your IPF day to day.

When you call IPFandYou™, our dedicated nurses can:


Answer Questions, Icon

Answer questions about IPF diagnosis

Lifestyle Tips and Insight, Icon

Share lifestyle tips to help you manage IPF

Support Services, Icon

Connect you with support services

Latest Information, Icon

Provide latest information on IPF

Answer Questions, Icon

Answer questions about IPF diagnosis

Lifestyle Tips and Insight, Icon

Share lifestyle tips to help you manage IPF

Support Services, Icon

Connect you with support services

Latest Information, Icon

Provide latest information on IPF

1-844-IPF-ANDU
(1-844-473-2638)

1-844-IPF-ANDU
(1-844-473-2638)

Monday – Friday 9 am – 6 pm ET

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Pulmonary Fibrosis Foundation Logo

Pulmonary Fibrosis Foundation Support Communities

The Pulmonary Fibrosis Foundation Support Communities connect people living with pulmonary fibrosis to each other for support and inspiration. There are communities just for patients and just for caregivers.


PatientsLikeMe logo

PatientsLikeMe

PatientsLikeMe is a free network where patients can track and share their real-world health experiences in order to help themselves, other patients like them, and organizations that research their conditions and develop treatments for them. The site has a community dedicated to pulmonary fibrosis.

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Rare Disease Day is all about support. The mission is to reach the millions of people around the world who are living with rare diseases and let them know they’re not alone. It also helps to connect the millions of people who act as caregivers and supporters for those with rare diseases so they, too, can share ideas and encouragement. The overall goal is simple: raise awareness about the global health challenges that rare diseases cause, and harness everyone’s positive creative energy to help find ways to make a difference.

Each year, people with idiopathic pulmonary fibrosis (IPF)—and their families and friends—use Rare Disease Day as a platform to take action. (Learn about IPF.) It’s a great way to get the word out about the disease and the need for more research. Rare Disease Day is held on the last day of February every year.

What Makes a Disease Rare?

In the US, any disease that affects fewer than 200,000 people is considered a rare or orphan disease, according to the Orphan Drug Act of 1983. There are nearly 7,000 diseases that meet this definition, and almost 1 in 10 Americans is affected by one of them—nearly 30 million people in total. IPF is one such disease. People with rare diseases, including those with IPF, often have difficulty getting a proper diagnosis. (Learn how IPF is diagnosed.) They may also have trouble finding information, getting treatment for their condition—if there’s even one available—and getting the support they need. This is why it is so important to raise awareness about these kinds of conditions.

How You Can Get Involved

Rare Disease Day is co-sponsored by the National Organization for Rare Disorders (NORD) and Rare Disease Europe (EURORDIS). These 2 organizations are dedicated to supporting people facing rare diseases around the world. Rare Disease Day was created to promote grassroots efforts to support patients and the people who care for them. There are many ways for individuals, organizations, and companies to participate, and the organizers encourage everyone who is interested to take part in any way they can—either through online activities or in-person events.

To learn more about the history of Rare Disease Day, and ways you can get involved, visit the official website.

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In this powerful film, real patients, caregivers, and healthcare providers share how IPF impacts their lives. Produced in collaboration with the Pulmonary Fibrosis Foundation and Coalition for Pulmonary Fibrosis, Every Breath Counts provides a clear understanding of what IPF is , while taking a close look at what life is like with this rare disease. Help make a difference and build awareness of IPF by sharing this video with friends and loved ones.

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Please rate it.