International CF Training Network and MECFA Diagnostics Program Expand to Pakistan in Partnership with Indus Hospital and Health Network

FOR IMMEDIATE RELEASE

June 2026

CFF-funded ICFTN training, MECFA MADI diagnostic donations, European CF Society Patient Registry participation, and Vertex free modulator access converge to bring comprehensive CF support to Pakistani patients for the first time.

KARACHI / ISTANBUL / BOSTON — The Middle East Cystic Fibrosis Association (MECFA) and the Marmara University Cystic Fibrosis Center have completed a clinical assessment visit to the Indus Hospital and Health Network (IHHN) in Karachi, launching a structured CF capacity-building program in Pakistan. The program is funded by the Cystic Fibrosis Foundation (CFF), which created the ICFTN training program; MECFA, through its MADI: The Path to Progress diagnostic campaign; and Vertex Pharmaceuticals, which provides CFTR modulator therapies to eligible Pakistani patients at no cost through its Free Access Program.

PROGRAM SPONSORS AND FUNDERS

Cystic Fibrosis Foundation (CFF): Created and funds the ICFTN training program and co-supports MECFA's MADI diagnostic initiative.

MECFA (Middle East Cystic Fibrosis Association): Donated sweat testing equipment, diagnostic supplies, and facilitated European registry participation through the MADI: The Path to Progress campaign.

Vertex Pharmaceuticals: Provides life-saving CFTR modulator therapies to eligible Pakistani patients at no cost through its Free Access Program.

WHAT IS THE ICFTN PROGRAM AND WHERE DID IT COME FROM

The International Cystic Fibrosis Training Network (ICFTN) was created and is funded by the Cystic Fibrosis Foundation. It pairs experienced CF centers with emerging programs through a structured training model designed to build local expertise, implement quality improvement methodology, and develop in-country training leadership that can sustain programs independently.

MECFA has been involved in ICFTN implementation since 2019. The Marmara University CF Center, directed by Prof. Bulent Karadag, first received ICFTN training at the University of Michigan C.S. Mott Children's Hospital CF Center. Marmara then became an ICFTN trainer center in its own right, delivering programs in Tunisia and Azerbaijan. Pakistan is the next country in this training cascade.

Prof. Karadag serves as Vice President of MECFA and Director of the Marmara University CF Center in Istanbul.

"The ICFTN model works because it builds real local expertise rather than dependence on external experts. What we learned through CFF's investment at Marmara, we are now passing forward, first in Tunisia and Azerbaijan, and now in Pakistan. The Cystic Fibrosis Foundation's vision and funding created this entire chain of knowledge transfer." — Prof. Bulent Karadag, Marmara University CF Center

MECFA MADI: THE PATH TO PROGRESS — HOW THE DIAGNOSTICS WERE FUNDED

The diagnostic equipment and supplies in this program were funded through MECFA's MADI: The Path to Progress campaign, a three-year regional initiative launched in February 2026 and supported by the Cystic Fibrosis Foundation. MADI addresses the most critical barrier to CF care across the region: children who are never diagnosed.

"If children are not diagnosed, they do not exist to health systems. They are not counted, not planned for, and not treated. MADI exists to change that, and Pakistan is one of the most important places we can begin." — Christine Noke, President and CEO, MECFA

Through MADI, MECFA donated a complete sweat testing system and a full year of supplies, IHHN Karachi. Before this donation, IHHN's CF clinic could perform approximately five sweat tests per week against a clinical need of 20 to 25. MECFA also facilitated IHHN's enrollment in the European Cystic Fibrosis Society Patient Registry Partnership Project at its Lahore campus, giving Pakistani patients access to free genetic testing and enabling the mutation data needed to determine eligibility for CFTR modulator therapy.

MADI's three-year target is 45 diagnostic systems, 45,000 sweat tests, and 6,000 genetic tests across 45 hospitals in MECFA member countries. Pakistan is an early and critical part of that effort.

To learn more or support the campaign: www.mecfa.org/madi-path-to-progress

VERTEX FREE ACCESS PROGRAM: MODULATORS REACHING ELIGIBLE PATIENTS

For Pakistani patients with CF mutations that respond to CFTR modulator therapy, Vertex Pharmaceuticals provides treatment at no cost through its Free Access Program. Indus Hospital and Health Network facilitates the import and distribution of these therapies to eligible patients. CFTR modulators address the underlying protein defect in CF rather than only managing symptoms. For eligible patients, access to these medicines is life-extending. The genetic testing now enabled through MECFA's European registry enrollment is what determines that eligibility.

WHAT HAPPENED DURING THE KARACHI VISIT

Prof. Karadag and the Marmara CF team spent several days at IHHN Karachi. The visit included clinic observation, meetings with the CF team and hospital leadership, a CF Family Day for patients and caregivers, and a structured assessment of diagnostic, registry, and quality improvement capacity.

Contributing virtually to the visit was Dr. Ali Akbar, a Pakistani UK CF specialist affiliated with Sandwell and West Birmingham Hospitals NHS Trust in the United Kingdom, who has supported Pakistan CF care for many years and provided expert input to the Marmara team during the program.

Key findings from the assessment:

IHHN serves approximately 200 CF patients through a weekly half-day clinic in Karachi, staffed by a coordinator and part-time nurse. Prior to MECFA's diagnostic donation, sweat testing was limited to approximately five tests per week. The hospital maintains a functioning patient registry with strong data discipline. Priority areas identified for improvement include BMI monitoring, lung function measurement, infection control protocols, and multidisciplinary team structure.

The visit concluded with agreement to establish seven multidisciplinary working groups covering clinical care, diagnostics, nutrition, physiotherapy, genetics, research, and family support. These groups will meet virtually on a monthly basis beginning in July 2026.

THE EUROPEAN CF SOCIETY PATIENT REGISTRY AND FREE GENETIC TESTING IN LAHORE

The European Cystic Fibrosis Society Patient Registry has, with the help of MECFA's coordination, extended participation to IHHN's Lahore campus. Prof. Lutz Nahrlich, Head of Pediatric Pulmonology and CF at Justus-Liebig University Giessen in Germany and Pharmacovigilance Study Manager of the ECFSPR, has been a key supporter of this effort. His engagement has been essential to establishing the registry framework and genetic testing infrastructure in collaboration with Prof. Milan Macek Jr from Charles University in Prague/Czech Republic that allows IHHN patients to receive free mutation analysis and be tracked with internationally standardized outcomes data.

The ECFSPR holds longitudinal data from over 57,000 people with CF across 46 countries. Participation connects IHHN to global CF research and benchmarking, and positions Pakistan to contribute to the international CF knowledge base.

THREE-PHASE PROGRAM STRUCTURE

Phase 1, completed: On-site assessment and training visit by the Marmara CF Center team at IHHN Karachi.

Phase 2, planned: The IHHN CF team travels to Marmara University CF Center in Istanbul for hands-on training.

Phase 3, planned: Marmara returns to Karachi to support quality improvement implementation and evaluate outcomes.

Once the program is established, IHHN will serve as Pakistan's national CF training hub, leading the development of additional CF centers in Lahore and Islamabad and creating a Pakistan-led care network.

ABOUT THE ORGANIZATIONS

Cystic Fibrosis Foundation (CFF) is a nonprofit organization and the world's leading organization dedicated to finding a cure for CF. CFF created and funds the ICFTN program and co-supports MECFA's MADI diagnostic initiative. www.cff.org

Middle East Cystic Fibrosis Association (MECFA) is a US-registered nonprofit working to improve the lives of people with CF across 36 member countries in the Middle East, North Africa, and Central Asia. Through its MADI campaign, MECFA donates diagnostic equipment, supplies, and genetic testing access to hospitals across the region. MECFA is an active ICFTN participant and European CF registry partner. www.mecfa.org

Marmara University CF Center in Istanbul is one of Turkey's leading CF programs and a regional ICFTN training center. The center is directed by Prof. Bulent Karadag, MD, Vice President of MECFA, and has delivered ICFTN training in Tunisia, Azerbaijan, and now Pakistan.

Vertex Pharmaceuticals is a global biotechnology company focused on developing medicines for serious diseases. Through its Free Access Program, Vertex provides CFTR modulator therapies at no cost to eligible patients in countries without commercial access, including Pakistan. www.vrtx.com

European Cystic Fibrosis Society Patient Registry (ECFSPR) is the world's largest CF patient registry, with longitudinal data from over 57,000 people with CF across 46 countries. The ECFSPR supports registry participation in low- and middle-income countries outside Europe, enabling standardized outcomes tracking and international benchmarking. www.ecfs.eu/ecfspr

Indus Hospital and Health Network (IHHN) is a not-for-profit healthcare system providing quality medical care at no cost to patients across Pakistan, serving over 6 million patients annually through 12 hospitals. IHHN's dedicated CF team, functioning registry, and commitment to multidisciplinary care make it the implementation site and future national CF training hub for Pakistan. www.indushospital.org.pk

MEDIA CONTACT

MECFA — Middle East Cystic Fibrosis Association

info@mecfa.org | www.mecfa.org

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