Our Commitment to Patients and Care Partners
Patients and care partners understand better than anyone what it’s like to live with pulmonary fibrosis. We listen closely. We learn from lived experience. And we work side by side with the community to develop medicines that reflect what truly matters to people living with pulmonary fibrosis.
Patient Advisory Councils
We partner with patients, care partners, and patient organizations through our Patient Advisory Councils to ensure real-life experiences, perspectives, and priorities are woven into every step of developing new treatments. Their insights help guide how we design our studies, improve our potential medicines, and think about participation, so our research reflects the needs, concerns, and daily realities of people living with pulmonary fibrosis.
By elevating patient and care partner voices, we aim to develop medicines, devices, and clinical trials that are more meaningful, more inclusive, and better aligned with what matters most to the pulmonary fibrosis community.
We are grateful to work alongside two Patient Advisory Councils:
IPAC:
Idiopathic Pulmonary Fibrosis (IPF) Patient Advisory Council
PPAC:
Progressive Pulmonary Fibrosis (PPF) Patient Advisory Council
Patient Advisor Journeys
Theresa and Ron
LIVING WITH PPF
“Living with progressive pulmonary fibrosis changes everything. Even a simple trip carries the burden of detailed planning, from oxygen needs to conserving energy and infection control at every step of the way. We do what we can, while we can, with the quiet understanding that travel may not always be part of our future.”
Sam
LIVING WITH IPF
“I was diagnosed with IPF at age 59. The shortness of breath made it feel like I was breathing through a straw. Because of scarring in my lungs, the oxygen I inhaled could not be effectively delivered to my vital organs. I was starving for oxygen.”
Donna
LIVING WITH PPF
“I was diagnosed with scleroderma-ILD [a type of ILD that leads to PPF] in 2015. Over the years, this health problem has taught me how to ration energy the way others ration money, choosing carefully what each breath will be spent on. Ordinary tasks – having coffee with a friend, climbing a flight of stairs, or carrying a basket of laundry – must be planned and negotiated with a body that no longer takes orders. I never can do all that I want to do in a day. I’ve become a master of hiding cough drops in my mouth, popping Imodium with a sip of water, dawdling to disguise my inability to walk at a normal pace, and slowing my speech to catch my breath. What I have lost in ease, I have gained in patience, improvisation and a quiet kind of grit.”
Patient and medical organization partnerships
We work alongside patient and medical organizations to support education and programs that help patients, families, and care partners better understand and manage their disease.
By partnering with others, we can extend the reach of scientific progress and address challenges that no one organization can solve alone.
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