QIS is not a new entrant to the pulmonary fibrosis and interstitial lung disease community. It is a new system inside a community that has been doing this work for decades. What follows is the map of organizations, support groups, and voices that have carried patients and families through diagnosis and beyond. Every entry is reviewed before it appears.
Nonprofit foundations and national organizations that fund research, support patients, and drive awareness across pulmonary fibrosis and interstitial lung disease.
For more than 25 years, the largest national nonprofit dedicated to funding research and advocacy for the PF community. Patient registry, Care Center Network of 81 hospitals, and the annual PFF Summit.
pulmonaryfibrosis.org →Research foundation accelerating therapy development for pulmonary fibrosis and ILD. Successor to Three Lakes Foundation. Notable for the PF-COLLECT Consortium and tissue-based research infrastructure.
threelakes1220.org →UK national charity serving the estimated 70,000 people living with pulmonary fibrosis in the UK. Patient support, research funding, awareness campaigns, and a growing network of local support groups.
actionpf.org →Patient support, education, and advocacy for the broader lung disease community including IPF and ILD. Longstanding national infrastructure for respiratory health.
lung.org →The umbrella organization for rare disease patient advocacy in the United States. Rare disease resources that extend well beyond pulmonary fibrosis.
rarediseases.org →Statewide rare disease advocacy organization representing the 1.2 million Illinoisans living with rare diseases. Launched March 24-25, 2026 during Rare Disease Night and Day at the Capitol in Springfield. Founded by Wayne Galasek, Doug Butchart, and Henry Heren.
illinoisrare.org →Independent nonprofit focused specifically on accelerating cures for idiopathic pulmonary fibrosis. Donor-funded research support. Idiopathic pulmonary fibrosis is the most common form of PF and the target of most clinical trial development.
ipffoundation.org →A 501(c)(3) founded in memory of Ron Wescoe, who was diagnosed with IPF in 2003 and passed away in 2004. Led by his daughter Jennifer H. Wescoe-Singley, M.Ed., NCC. Support groups, the Wescoe Lecture Series, a lung transplant mentorship program, electronic and printed Carebook, and community events across the mid-Atlantic region.
wescoe.org →Belgium-registered umbrella organization for pulmonary fibrosis patient organizations across Europe, established in 2016. Represents an estimated 400,000 PF patients on the continent. Patient representative within ERN-LUNG (the European Reference Network on Rare Pulmonary Diseases) and a member of EURORDIS and the EMA Patients' and Consumers' Working Party. Hosts the biennial European PF Patient Summit.
eu-pff.org →Canada's only national patient organization for pulmonary fibrosis. A registered charity established in 2009 by Robert Davidson. Serves the estimated 30,000 Canadians living with PF through patient and caregiver support, online education, advocacy for oxygen access, and the Tackle the Crackle awareness campaign that calls on physicians to listen for the early auscultation signs of PF.
cpff.ca →Ireland's national patient organization for lung fibrosis, founded in 2002 in memory of Fergus Goodbody by Nicky Goodbody, the late Terence Moran, Marie Sheridan, and Professor Jim Egan. Serves approximately 5,000 Irish patients living with PF, with about 1,000 new cases each year. A founding member of EU-PFF. Recently launched the Achieving Equity strategy (2025-2028) calling for a National Clinical Programme for Lung Fibrosis.
ilfa.ie →Rare disease policy advocacy organization focused on federal and state legislation, scientific policy, and patient community empowerment. The voice for rare disease patients in Washington and in state capitals.
everylifefoundation.org →Rare disease advocacy and community support across more than 10,000 identified rare diseases. Patient family connections and resources.
globalgenes.org →Peer support networks, online communities, and patient-led organizations where the living experience of pulmonary fibrosis is shared and carried together.
International PF patient support network. Patients helping patients. Monthly educational meetings, a Spanish-speaking group, Warrior to Warrior Q&A sessions, and more than 100 recorded videos. Over 7,000 members. Jennifer Bulandr serves as Director of Development and Communications.
pfwarriors.org →The Pulmonary Fibrosis Foundation connects patients with more than 150 support groups nationwide. In-person and virtual. PFF also hosts three monthly support groups open to all attendees on Zoom.
PFF support group finder →Action for Pulmonary Fibrosis maintains a growing network of local PF support groups across the United Kingdom. In-person and online, including dedicated groups for specific regions such as Wales.
APF support group finder →Wescoe Foundation hosts monthly PF and IPF patient support groups across the mid-Atlantic in partnership with Penn State Hershey, Temple Health, St. Luke's, and UPMC Simmons Center. Two dedicated Care Partner groups on Zoom. Contact Jennifer H. Wescoe-Singley at jennifer@wescoe.org.
Wescoe support groups →Online patient community operated in partnership with the Pulmonary Fibrosis Foundation. Peer support, experience sharing, and caregiver connection.
inspire.com PF community →Physician-patient collaborative for interstitial lung disease. Weekly virtual community meetings on Zoom, peer-to-peer support connecting newly diagnosed patients with those further along the journey, and an extensive educational library covering oxygen therapy, nutrition, palliative care, and living with ILD.
ildcollaborative.org →Trial registries, patient registries, and professional societies where the research infrastructure of the PF/ILD field lives.
The federal database for active and recruiting clinical trials. Searchable by condition, location, eligibility, and phase. The starting point for any patient or caregiver considering a trial.
PF trials on ClinicalTrials.gov →Long-running pulmonary fibrosis patient registry maintained by the Pulmonary Fibrosis Foundation. Data source for research across the PF/ILD field including partnerships such as the PRECISIONS trial.
PFF Registry →Yale School of Medicine's pulmonary section, chaired by Naftali Kaminski, MD since 2013. The Kaminski Lab pioneered genome-scale transcript profiling in advanced lung disease and has contributed foundational single-cell RNA sequencing research in pulmonary fibrosis. Yale-PCCSM co-leads the Three Lakes Consortium for Pulmonary Fibrosis with the University of Pittsburgh and the Three Lakes Foundation.
medicine.yale.edu/internal-medicine/pulmonary →Professional society for respiratory medicine, critical care, and sleep medicine. Annual International Conference plus the Respiratory Innovation Summit and the new ATS AI Lab! Answers program where the QIS poster, kiosk, and presentation take place May 15-19, 2026 in Orlando.
thoracic.org →European counterpart to ATS. Research publications, treatment guidelines, and the annual ERS Congress. Primary infrastructure for the European respiratory medicine community.
ersnet.org →Federal research agencies, policy institutions, and editorially-governed information sources with sustained presence in the PF/ILD field.
National Heart, Lung, and Blood Institute research and patient-facing information on idiopathic pulmonary fibrosis and related conditions. The Breathe Better Network serves as a coordinating hub for PF community education.
NHLBI idiopathic pulmonary fibrosis →Policy research and regulatory engagement relevant to rare disease and pulmonary fibrosis. Venue of the March 2026 RISE Together Workshop where the QIS thesis was validated on the record.
healthpolicy.duke.edu →Nonprofit public-private partnership established in 2005 in response to the FDA Critical Path Initiative. More than 1,600 scientists across international consortia. Home of the Patient-Reported Outcome Consortium, the eCOA Consortium, and the Rare Disease Clinical Outcome Assessment Consortium. Neutral third-party convener for regulators, pharma, academia, and patient organizations on drug development tools.
c-path.org →Nonprofit research advocacy alliance founded in 1989. Membership of more than 500 institutions representing 125 million Americans. Advocates for federal investment in NIH, CDC, FDA, and other research agencies. Publishes national public opinion research on health and science priorities.
researchamerica.org →European rare disease portal and the authoritative international reference for rare disease information. Detailed disease databases, expert care center listings, and clinical trial information across all identified rare diseases including idiopathic pulmonary fibrosis.
orpha.net →Federal regulatory infrastructure focused on rare disease development including interstitial lung disease. Dockets where the QIS voice is on the public record.
FDA Rare Disease Innovation Hub →Every patient journey is a caregiver journey. The following organizations serve the spouses, children, parents, and friends who are carrying the weight alongside the diagnosis.
Published by PF Warriors. Written by patients and caregivers who have lived the journey. Free resource specifically designed to support caregivers through the daily realities of pulmonary fibrosis.
PF Warriors caregiver resources →National caregiver support and education. Resources translated into multiple languages for diverse families.
caregiver.org →Peer-to-peer caregiver community. Practical daily resources for families supporting a loved one with chronic and rare disease.
caregiveraction.org →A small set of items QIS is actively tracking across regulatory, research, and community fronts. Updated when there is something worth naming.
EU-PFF convened patients, caregivers, clinicians, researchers, policymakers, and industry partners at the Square Congress Centre in Brussels for the Summit's 10th anniversary. We participated remotely across all three days. Eleven discrete examples of the same structural gap surfaced across the program. The qualitative signal patients generate between visits, before diagnosis, around eligibility decisions, and inside HTA submissions was named repeatedly as the missing layer. We are now in conversation with EU-PFF on a Founding 10 partnership and a collaboration on the caregiver survey EU-PFF is actively designing.
Read our field brief from the Summit →QIS is at the American Thoracic Society conference in Orlando with three engagements across five days. The QIS poster runs at the Respiratory Innovation Summit, Space 143, on Friday and Saturday, presenting the before-and-after demonstration on a composite patient case built from INPULSIS placebo-arm data. A kiosk runs at the new ATS AI Lab! Answers program, AI Lab Kiosk 4 in Booth 1028, for fifteen hours across Sunday, Monday, and Tuesday. A twenty-minute education presentation in the AI Lab! Answers Theater on Tuesday from 11:55 AM to 12:15 PM addresses how patients are actually using AI. The full plan is at qualividence.com/ats.
ATS International Conference →The OMB/OSTP FY27 memo explicitly calls for piloting novel models of collaboration in federal research infrastructure. QIS continues to engage the docket as it moves toward its comment window. This is the regulatory pathway for qualitative patient intelligence to enter federal research policy as architecture rather than narrative.
FDA Rare Disease Innovation Hub →The Pulmonary Fibrosis Foundation announced Broadway Belts for PFF on March 9, 2026 at SONY Hall. Alongside ongoing Care Center Network expansion (now at 81 hospitals) and the PRECISIONS pharmacogenetic trial built on the PFF Registry, the PFF infrastructure for PF/ILD research and patient support continues to deepen.
Pulmonary Fibrosis Foundation →When we attend a major convening in the field, we publish a public-facing brief on what we observed and what it means for the work ahead. Internal strategic detail stays internal. The patterns and the public record get shared.
The 4th European Pulmonary Fibrosis Patient Summit ran April 24-26 at the Square Congress Centre in Brussels. The Summit also marked the 10th anniversary of the European Pulmonary Fibrosis Federation, an umbrella organization for 23 PF patient organizations across 18 European countries. We attended remotely across all three days.
Across the weekend, every clinical trial discussed, every transplant eligibility criterion, every prevention framework, and every reimbursement pathway relied on quantitative endpoints. The qualitative signal that patients and caregivers generate, between visits, before diagnosis, around eligibility decisions, throughout the waitlist period, and inside HTA submissions, was named repeatedly by clinicians and by industry as the missing layer. The Summit produced eleven discrete examples of the same structural gap.
The clinical trials presented on Day 1 demonstrated the pattern at the trial level. TETON-2 lost 174 of 298 inhaled treprostinil patients before the 52-week mark, with no qualitative data on what drove the decisions to withdraw. The SENSCIS trial recorded that 75.7% of patients experienced diarrhea, but did not capture the qualitative threshold between tolerating and quitting. The RELIEF trial terminated early due to slow recruitment despite a positive efficacy trend. The ILD nurse role was presented as the central coordinator of the whole patient, but the framework did not address where the qualitative intelligence the nurse holds actually goes. AI is now used to discover drug targets in 30 months, but no equivalent AI effort exists for patient retention or longitudinal psychosocial monitoring. Early treatment was named as a clinical aspiration, but the infrastructure to detect who needs treatment before FVC decline is measurable does not exist.
The transplant session extended the pattern into care after the trials. Patients on the waitlist live in a longitudinal psychosocial environment that is invisible to the eligibility committee. Caregivers carry the daily burden of managing the patient's condition and their own deferred health needs. Symptom-burden inventories happen at the clinic visit, not in the kitchen at 9pm. Format choice itself produces a gap: at the BMS Mini-Symposium on the Summit's final day, patient voice was elicited in controlled, anonymous, aggregated form via Slido word cloud and was excluded from the attributable, accountable form of Q&A entirely.
Five of the eleven gaps are about qualitative signal that is captured nowhere. Three are about signal captured in one channel but never reaching the decision point. Two are about signal captured once and never updated. One is the format-choice gap, which cannot be explained by capacity constraints. None of the eleven are about insufficient quantitative measurement. The infrastructure problem is qualitative throughout.
Day 2 surfaced eight findings across the field's most rigorous published frameworks on early diagnosis and prevention. None of the frameworks describe a mechanism for how an at-risk individual becomes visible to the system before symptoms force a clinical encounter. The carer-as-trigger pattern was named explicitly by Patricia Gorman, an ILD nurse from Northern Ireland, with thirteen years of clinical practice behind her sentence: the trigger that converts symptoms into clinical action is not the patient. The patient has already adapted. The trigger is the family member or the carer. None of the frameworks include the caregiver as a primary data source. Symptom normalization, fatigue as the late-talked symptom, the underuse of auscultation, incidental ILA findings nobody reads, and policy frameworks without operational infrastructure round out the eight.
There's lots of problems. But it is difficult when you have people who normalize those symptoms. And I think a symptom that we don't really talk about until the end is fatigue.
Patients are not just recipients of care, they are partners in creating better ones.
When I was in medical school, I was not educated in communication, on how to break bad news. Now, communication and compassion is the core of the training we do.
Two anchor statistics translate the Summit's pattern into measurable harm. A 1% lung transplant patient acceptance rate is the patient-level cost of the qualitative gap: people whose disease trajectory ended on a waitlist that did not deliver in time, in part because the qualitative signals that could have escalated their case were never received as evidence. A 90% clinical trial failure rate is the system-level cost: trials whose endpoints did not match what patients can tolerate or what they actually value. Together these statistics bridge the philosophical question of patient voice as evidence to the practical case for qualitative intelligence as infrastructure.
A trans-Atlantic Founding 10 architecture is now in view. The Pulmonary Fibrosis Foundation on the US side, with the PROLIFIC research consortium and the NIH PREEMPT-PF program for early diagnosis. The European Pulmonary Fibrosis Federation on the European side, with 23 member organizations, the Belgian Framework, and an actively-designed caregiver survey. QIS as the methodological infrastructure that makes both sides operationally coherent.
The most operationally specific opening from the Summit is the EU-PFF caregiver survey. Active design is in motion at the Caregivers Matter workshop. QIS provides the methodological infrastructure that converts a survey into a continuously learning qualitative intelligence system. The framing is collaborative: bring methodological infrastructure to a survey already in motion.
ATS Orlando, May 15-19, is the inflection point. The integrated brief findings from the Summit travel into the ATS conversation. We are there to build the ecosystem with patient organizations, clinicians, foundations, researchers, and partners across the field. The Founding 10 architecture moves from possibility to scoping.
The full integrated brief is available on request. It includes the eleven-gap inventory in detail, the Day 2 framework analysis, the strategic developments across the weekend, and the operational engagement plan. Request the brief →