PFF Summit 2023 Program

See you at the JW Marriott Orlando!

4040 Central Florida Parkway Orlando, FL 32837

While attending the PFF Summit, you can treat yourself to the region’s most elegant destination, where a picturesque setting, world-class recreational features, immaculate facilities and unparalleled service come together to create an exceptional resort.

The resort features a lazy river pool, three-story luxury Ritz-Carlton Spa, 18-hole championship golf course and Grande Lakes Sports including fishing, eco-tours, mountain bike trail and more.

Further, you can experience a true culinary experience at Grande Lakes Orlando, where the luxury resort offers a wealth of food and beverage concepts, sure to please any palate. Enjoy a taste of diverse cuisines, from fine Italian and Southern cuisine to artisanal café fare and farm-to-table dining. Choose from twelve outlets at The Ritz-Carlton, JW Marriott, and the signature Whisper Creek Farm, a sustainable farm, garden, and apiary that powers both resort’s restaurants and bars. Haven’t registered yet?

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Legend

Unless noted otherwise with a symbol, you may attend any session you’d like. The color codes below represent sessions that have been tailored to best fit your experience. The colors are located next to the time of each session.

Newly diagnosed patients and caregivers

Those who have been living with PF for awhile

Thursday,

8:00 a.m. - 1:30 p.m.

Those who have lost a loved one to PF Healthcare professionals & researchers

November 9

This is a closed session for healthcare providers only.

Nurses and Allied Health Network members meeting

Location: TBD

Speakers: TBD

Welcome and updates from the NAHN working groups

Understanding the diagnostic pathway and treatment in ILD: The patient’s journey

Pulmonary hypertension related to ILD: What you need to know

The autoimmune ILD patient journey: What are you testing for? 10 minute coffee break

Non-pharmacological treatments for ILD: Pulmonary rehabilitation, oxygen therapy, support groups

Addressing the challenges of care in ILD: Complexity of patient care, coordination of care, medication

Partnering with the lung transplant center

Networking Lunch

Legislation journey: How to get involved to make an impact

8:00 a.m. - 4:00 p.m.

This is a closed session for healthcare providers and industry representatives only.

Community pulmonologists

Location: TBD

Chairs: Patricia Sime, MD; Tracy Luckhardt, MD

Diagnosis of ILD

Treatment of ILD and IPF

Welcome, housekeeping, and introductions

Diagnosis of ILD: Updates to guidelines and arriving at the right diagnosis

Role of rheumatology: When to use rheumatology and serology consults

HRCT Interpretation: Perils and pitfalls

Bronchoscopic tools: Use of genomic classifiers and options for cryobiopsy

Panel discussion / Q&A

15 minute break: 9:45 a.m. - 10:00 a.m.

Symptom management in ILD: Cough, dyspnea, and fatigue

Use of antifibrotic agents: When to start, managing side effects, and managing expectations

Hypersensitivity pneumonitis

Treatment of Non-IPF ILD

CTD-ILD: Treatment and management

PH-ILD: Diagnosis and treatment options

Panel discussion / Q&A

Lunch: Noon - 1:15 p.m.

Lung transplant update: Outcomes and improvements; when and who to refer

When your patients progress

How the PFF can help you

Multidisciplinary Discussion (MDD)

When to refer to clinical trials and what is on the horizon for treatment of ILD

When and how to use palliative care

Panel discussion / Q&A

Afternoon break: 2:15 p.m. - 2:30 p.m.

PFF Registry: What you need to know and why it’s important

The PFF Care Center Network: how you can collaborate with a CCN site

This MDD will present interesting cases and include an interactive discussion with a live Q&A

What is PF:101 and an introduction to the PFF

Location: TBD

Session chair: TBD

Speakers: TBD

Introduction to the Pulmonary Fibrosis Foundation

Overview of pulmonary fibrosis

• What is pulmonary fibrosis?

• Causes and classification of pulmonary fibrosis

Testing and monitoring in pulmonary fibrosis

Symptom management for PF patients

Live all-group discussion and audience Q&A

1:30 p.m. - 2:30 p.m. 3:00 p.m. - 4:00 p.m.

Introduction to the PFF Registry and the Care Center Network

Location: TBD

Speakers: TBD

PFF Registry

Overview of who/what is in the Registry

• Summary of first phase

• Plans for second phase

• How you can participate

PFF Care Center Network: Why it’s important and how you can find a CCN site

Live all group discussion and audience Q&A

3:00 p.m. - 4:00 p.m.

Understanding environmental impacts: Climate change, mold risk factors, and more

Location: TBD

Session chair: TBD

Speakers: TBD

Health risks of climate change in ILD and other diseases

Wildfire health impacts & personal protective equipment

Advocating for environmental health equity and policies

Live group discussion and audience Q&A

5:00 p.m. - 8:00 p.m.

Welcome Reception and Poster Presentation

Location: TBD

Please join us for the Welcome Reception and Poster Presentation! During this time, you can enjoy hors d’oeuvres and drinks, meet and mingle with other attendees, and browse posters created by researchers. The posters provide a glimpse of what is currently underway for a variety of research projects. Each researcher will be stationed at their poster where they will provide you with a brief overview of their work. At the end of the evening, we’ll award ribbons to five researchers.

Friday, November 10

8:00 a.m. - 10:00 a.m. PLENARY SESSION

It takes a village: The critical role of federal agencies in PF research and care

Location: TBD

Session chair: TBD

Speakers: TBD

Preliminary content

Keynote Address Food & Drug Administration (FDA) perspective: Accelerating new treatments while maintaining clinical trial safety

Talk 2 National Heart, Lung & Blood Institute (NHLBI): Charting a course for the future of PF research

Talk 3 How the Department of Defense supports PF research relevant to our military and our patients

Talk 4 Medicare & Medicaid: The urgent need for supplemental oxygen reform

10:30 a.m. - 12:00 p.m.

Roundtable learning

Location: TBD

Session chair: TBD

Speakers: TBD

Journey to the right diagnosis

Roundtables: IPF, other ILDs of unknown cause, unclassifiable ILD, autoimmune ILDs, and hypersensitivity pneumonitis

10:30 a.m. - 12:00 p.m.

Living with PF in a COVID world

Location: TBD

Session chair: TBD

Speakers: TBD

Current state of COVID: Rates of infection, variants, vaccination efficacy, and more

Ongoing COVID considerations for PF patients and caregivers

Understanding pulmonary fibrosis diagnosed post-COVID (commonalities between PF and COVID)

Panel discussion and Q&A

10:30 a.m. - 12:00 p.m.

Disparities in ILD

Location: TBD

Session chair: TBD

Speakers: TBD

Sex and racial disparities in diagnosis and management of the fibrosis ILDs

Neighborhood disparities and impact of rural-urban geo-location on outcomes in pulmonary fibrosis

Special pharmacies, 340b, and how to finance new therapies in PF

Panel discussion / Q&A

1:30 p.m. - 3:00 p.m.

Survive and thrive post-lung transplant: Part I

Location: TBD

Session chair: TBD

Speakers: TBD

Medication interactions and possible complications: What to avoid

Infection control without complete isolation

Caregiving for the transplant recipient

1:30 p.m. - 3:00 p.m.

Use of genetics in ILD

Location: TBD

Session chair: TBD

Speakers: TBD

Impact of telomeropathies on the clinical course of care in pulmonary fibrosis

When is the right time for genetic testing for our patients

Pros and cons debate: The use of cryobiopsy

Panel discussion / Q&A

3:30 p.m. - 5:00 p.m.

Beyond HRCT

Location: TBD

Session chair: TBD

Speakers: TBD

Novel uses of imaging in evaluation, diagnosis, and prognosis of PF (OCT)

Novel uses of imaging in evaluation, diagnosis, and prognosis of PF (PET CT)

Artificial intelligence in HRCT analysis

Interstitial lung abnormalities (ILAs): What do we currently know?

Panel discussion / Q&A

10:30 a.m. - 12:00 p.m.

Multidisciplinary Discussion (MDD); Expert presentations of interesting cases

Location: TBD

Session chair: TBD

Speakers: TBD

Pathology

Radiology

Rheumatology

Panel Discussion / Q&A

1:30 p.m. - 3:00 p.m.

Research: Be the change you want to see in PF

Location: TBD

Session chair: TBD

Speakers: TBD

Basic, translational, and clinical research: Learn the differences and understand the timelines

The importance of participating in clinical trials

What is it like to participate in a clinical trial? Process, expectations, patient reported outcomes, and more The PFF Registry and why it matters to research

1:30 p.m. - 3:00 p.m.

Using narrative medicine to understand chronic illness

Location: TBD

Session chair: TBD

Speakers: TBD

Defining narrative medicine; using storytelling to understand the human experience of chronic illness

PFF Ambassadors: The power of your story

Panel discussion / Q&A

6:00 p.m. - 9:00 p.m.

Cocktail hour and Networking Dinner

Cocktail hour: 6:00 p.m. - 7:00 p.m.

Networking dinner: 7:00 p.m. - 9:00 p.m.

All attendees are invited to the Networking Dinner for a sit-down meal and cocktails or light beverages. We encourage you to meet and mingle with other guests seated at your table! During the evening, special guests will take the stage to provide remarks.

Saturday, November 11

Clinical trials: Accelerating finding a cure

Location: TBD

Session chair: TBD

Speakers: TBD

Preliminary content

Talk 1 Setting the stage: Why is this important, how clinical trials are conducted, language of clinical trials, and challenges of clinical trials

Keynote address Adaptive clinical trials: The future

Talk 2 Artificial intelligence (AI) tools and algorithms: How to use AI/machine learning to increase identification and recruitment of patients

Talk 3 Emerging devices used in clinical trials: Device, observational, and implementation

Live panel discussion and audience Q&A

10:30 a.m. - 12:00 p.m.

All about genetics

Location: TBD

Session chair: TBD

Speakers: TBD

Genetics and PF: Whether to get tested

Familial PF and Hermansky Pudlack syndrome

The role of telomere biology disorders in PF and how to get tested

Ongoing studies in familial PF

10:30 a.m. - 12:00 p.m.

Taking the leap: Preparing for a lung transplant

Location: TBD

Session chair: TBD

Speakers: TBD

Navigating the evaluation process

Pulling together the appropriate supports: Social, emotional, and financial

Patient panel: Perspectives from all sides: Choosing a lung transplant, choosing not to be transplanted, and those who are ineligible

10:30 a.m. - 12:00 p.m.

Breathe easy: Using supplemental oxygen

Location: TBD

Session chair: TBD

Speakers: TBD

Oxygen overview

Tips to receive the O2 you need: Compressed, liquid, or portable oxygen concentrators (POCs)

Panel discussion / Q&A

10:30 a.m. - 12:00 p.m.

Reviewing progress: Research in the pipeline

Location: TBD

Session chair: TBD

Speakers: TBD

Top 3 poster winners present their projects

PFF Scholars: Early career investigators making a difference

Panel discussion / Q&A

1:30 p.m. - 3:00 p.m.

Global view of ILD

Location: TBD

Session chair: TBD

Speakers: TBD

Climate change and environmental impact in patients with fibrosis ILD

Worldwide impact of ILD and how diagnosis and treatment differs between countries and regions

Post-COVID and ILD development and how this differs in various countries

Panel discussion / Q&A

1:30 p.m. - 3:00 p.m.

Your PF toolkit: Tips and strategies for managing symptoms

Location: TBD

Session chair: TBD

Speakers: TBD

Strategies for managing symptoms

Your medications: What to expect

Nutrition, supplements, and what to avoid

Panel discussion / Q&A

1:30 p.m. - 3:00 p.m.

Building resilience

Location: TBD

Session chair: TBD

Speakers: TBD

How you and your loved ones can prepare for change

Anxiety and depression: How you can build resilience

Meditation and mindfulness

Panel discussion / Q&A

1:30 p.m. - 3:00 p.m.

Survive and thrive post-lung transplant: Part II

Location: TBD

Session chair: TBD

Speakers: TBD

Protecting your new lungs: Exercise post-transplant

Understanding possible long-term complications: : Dermatological, other cancers, and more

Testimonial: Anne Lucas shares her story

Panel discussion / Q&A

3:30 p.m. - 5:00 p.m.

The future of clinical trials in ILD

Location: TBD

Session chair: TBD

Speakers: TBD

What we have learned from the PFF Registry 1.0

Summary of the NHLBI roadmap for PF research

REMAP-ILD: Where we are, where we’re going, and what we need from you

Pre-clinical models and drug development

Panel Discussion and Q&A

3:30 p.m. - 5:00 p.m.

Roundtable #1: Understanding and communicating hospice and palliative care options

Location: TBD

Session chair: TBD

Speakers: TBD

The importance of ethnic and racial diversity: Communication and how it varies by culture

Addressing stigma of hospice and palliative care and how to find alternative wording

Patient presentations and role play — Audience response with Q&A

Panel discussion / Q&A

3:30 p.m. - 5:00 p.m.

Roundtable #2: How to improve symptom management in PF

Location: TBD

Session chair: TBD

Speakers: TBD

Assessing symptoms: ILD specific PROs

Understanding breathlessness

Cough in all its forms

Fatigue: Finding the source

Panel discussion / Q&A

3:30 p.m. - 4:30 p.m.

Financial assistance resources

Location: TBD

Session chair: TBD

Speakers: TBD

Anticipating the impact of new legislation of drug costs

301b pharmacies and patient assistance programs: How to afford the various treatments

Panel discussion / Q&A

3:30 p.m. - 4:30 p.m.

Improving pulmonary fitness

Location: TBD

Session chair: TBD

Speakers: TBD

Pulmonary rehabilitation (PR): The essential first step

• Overview of virtual resources — doing PR all at home

• Different stages of PR

What do all these numbers mean? Understanding pulmonary function tests (PFTs)

Using exercise as a lifestyle

Panel discussion / Q&A

3:30 p.m. - 4:30 p.m.

Get involved! Legislative advocacy

Location: TBD

Session chair: TBD

Speakers: TBD

How you can make a difference

Panel discussion / Q&A