PFF Summit 2017 Patient Sessions

Thursday > Session

Patients and Caregivers: Intro to the PFF, Your Call to Action, and Understanding the Basics of Research

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Kevin Flaherty,  MD, MS: Introduction of the PFF and the Care Center Network VIEW SLIDES

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Hal Collard, MD, John Morthanos, and David McNinch: Research 101: Understanding the process, terminology, definitions, and how a drug is brought to market  VIEW SLIDES

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Kate Gates, Anne Dimmock, Lisa Boyd, Dot Delarosa, Barbara Murphy: Need Meets Action Part I: Overview of volunteering at the PFF

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Amanda Miller: Need Meets Action Part II: Overview of effective fundraising VIEW SLIDES 



Friday > Sessions

Keynote Address

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Jim Kiley, PhD: National Heart, Lung, and Blood Institute (NHLBI) support for personalized therapy in lung disease VIEW SLIDES

Plenary Session I: Promise of Genetics and Personalized Medicine in PF

LEADERS: Bill Schmidt and Greg Cosgrove, MD

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Jeff Trent: State-of-the-art approaches to genetic discovery in complex disease VIEW SLIDES

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Jim Loyd, MD: Current status of clinical genetic testing in ILD VIEW SLIDES

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Janet Talbert MS, CGC: A genetic counselor's perspective: Impact of genetic information for patients and families VIEW SLIDES   

Kidbilly Music, Presented by Genentech
Summit WatchKidbilly Music : Perspectives from All: Songwriting for team-building, networking, and emotional healing
Understanding ILD and IPF

LEADERS: Amanda Miller

Kristin Highland, MD: Part I: Overview of ILD, IPF, and connective tissue disease  SLIDES AND WEBINAR ARE UNAVAILABLE AT THIS TIME

Mary Beth Scholand, MD: Part II: Understanding your test results: HRCT, 6MWT, PFTs, and oximetry  SLIDES AND WEBINAR ARE UNAVAILABLE AT THIS TIME

Quality of Life: Next Steps

LEADER: Amanda Miller


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Josh Mooney, MD, MS: Part I: Evaluation for lung transplantation VIEW SLIDES

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Linda Manning, MD: Part II: Using mindfulness for stress management in chronic disease VIEW SLIDES

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Wendi Mason, MSN: Part III: Treatment of cough VIEW SLIDES

 

Call to Action Part I

LEADER: Kate Gates


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Kathleen O. Lindell, PhD, RN,  John Mulder: Transitioning after the loss of a loved one, after a transplant

 

Kate Gates: How to participate in legislative advocacy  SLIDES AND WEBINAR ARE UNAVAILABLE AT THIS TIME

Oxygen Therapy, Pulmonary Rehabilitation, and Symptom Management

LEADER: Heather Kundert

 

Susan Jacobs, RN, MS: Part I: Living with oxygen therapy and PF; Overview of various types of POCs, compressed gas units, trans-fill systems, and backpacks; How can I be active and travel with O2 (MedJet and other emergency travel services)?  SLIDES AND WEBINAR ARE FORTHCOMING

 

Trina Limberg, BS, RRT: Part II: Pulmonary rehab: What is it and how can it help me?  SLIDES AND WEBINAR ARE UNAVAILABLE AT THIS TIME

 

Wendi Mason, MSN: Part III: Symptom management: Cough, dyspnea, and fatigue SLIDES AND WEBINAR ARE UNAVAILABLE AT THIS TIME

What's in the Pipeline? Current Clinical Trials, Potential Therapies, and How the Process Works

LEADER: Greg Cosgrove, MD

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Bill Bradford, MD, PhD: Part I: Understanding how clinical trials work and the therapeutic process to bring a drug to market  VIEW SLIDES

 

Greg Cosgrove, MD: Part II: Current clinical drug trials in the pipeline for IPF and PF, and an overview of potential therapies moving forward  SLIDES AND WEBINAR ARE UNAVAILABLE AT THIS TIME


Call to Action Part II: How to Host a Fundraising Event

LEADER: Seth Klein

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        Amy Kozyra: How to host a fundraising event VIEW SLIDES



Saturday > Sessions

Keynote Address

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Gordon R. Bernard, MD: Re-thinking clinical trials in PF VIEW SLIDES

Plenary Session and Panel Discussion: Maximizing the Impact of Available Therapies in IPF

LEADER: Lisa Lancaster, MD

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Kevin Flaherty, MD, MS: PFF Care Center Networks and PFF Patient Registry VIEW SLIDES

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Jason Martin, MD: Improving care for PF patients and adherence to treatment plans: A physician family member's perspective VIEW SLIDES

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PANEL: Gordon R. Bernard, Kevin Flaherty, Jason Martin, Gregory Cosgrove, Heather Kagel, Carolyn Adams-Duda, Maryluz Fuentes, and Jane Nelson.

Basics of Genetics and What We Know About Stem Cell Therapy

LEADER: Heather Kundert

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Jim Loyd, MD: Part I: Genetics 101 in IPF VIEW SLIDES

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Sonye Danoff, MD: Part II: Stem cell therapies and biotourism; What is stem cell therapy and what is it approved for? Stem cell centers in the community VIEW SLIDES

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Marilyn Glassberg, MD: Part III: Clinical trials with stem cells for ILD VIEW SLIDES

Summit WatchQ&A Panel
Diagnosis and Treatment of Comorbidities and Approved Therapies for IPF   

LEADER: Mary Kiener

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Joyce Lee, MD: Part I: Overview of pirfenidone and nintedanib        VIEW SLIDES

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Wendi Mason, MSN: Part II: Adherence to treatment plans: Safety and management of side effects with pirfenidone and nintedanib   VIEW SLIDES

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Anne Turner, RN, BSN: Part III: How to qualify for reduced payment plans VIEW SLIDES

Roundtable Discussions   

LEADER: Kate Gates

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John Mulder: Caregiver burnout VIEW SLIDES

Summit WatchDavid Lederer, MD, and Michele Peters: How to prepare for an effective clinical visit with your doctor
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Jim Jackson, PhD: Depression and anxiety in chronic disease VIEW SLIDES

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Kathleen O. Lindell, PhD, RN: Palliative and hospice care  VIEW SLIDES

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Kate Gates: How to participate in legislative advocacy VIEW SLIDES