MECFA’s strategy is standardized and repeatable across member countries

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Pillar 1 — Diagnose & Make Patients Visible

• Sweat testing expansion

• Registry integration

• Minimum viable datasets

• Diagnostic equipment donations

Pillar 2 — Train Multidisciplinary Teams

• 5-Day CF Bootcamps

  Hands-on training at Marmara CF Center

• Longitudinal mentorship

• Quality Improvement (QI) education

Pillar 3 — Ministry of Health Advocacy

• Evidence-based policy engagement

• National recognition of CF centers

• Drug access negotiation

• MAP (MECFA Access Program) implementation in Jordan as Pilot Program

This framework guided every program in 2024–2025.

Building a National CF Center Network

Status: Active (Began 2024, concludes 2026)

In May 2024, Marmara CF Center conducted an intensive mentorship visit to Bechir Hamza Hospital in Tunis.

Key 2024 Achievements:

• On-site multidisciplinary training

• Introduction of Quality Improvement framework

• Outpatient clinic advocacy

• Initiation of physiotherapy services for outpatients

• Structured nurse follow-up system implemented

The Tunisia pilot is designed to:

• Establish a state-of-the-art CF Center

• Improve BMI and FEV1 outcomes

• Expand to a National CF Center Network

This program represents MECFA’s full Circle of Care model in action.

Designed 2025 | Diagnostics Delivered | QI Implementation Begins 2026

In 2025, MECFA launched a major national diagnostic and capacity-building initiative in Pakistan — laying the foundation for measurable improvements in CF survival and national scale-up.

National Diagnostic Expansion

MECFA donated:

• 3 UTSAT Iontophoresis Units

• 3 Sweat Chloride Analyzers

• 3,000 sweat tests (1,000 per hospital)

• One full year of testing supplies

• Technical training and ongoing support

These systems were delivered to three state hospitals:

• Indus Hospital – Karachi

• Children’s Hospital – Lahore

• Islamabad International Hospital & Research Center – Islamabad

This intervention significantly expands access to accurate, affordable sweat testing, which is the gold standard for CF diagnosis.

For many families in Pakistan, lack of diagnostic access has meant delayed or missed diagnosis — preventing access to lifesaving care, including eligibility for modulator therapy.

With these donations:

• Sweat testing is now available free of charge within participating state hospitals

• Clinicians are trained in standardized diagnostic methodology

• Hospitals are required to maintain free testing once the initial donation period concludes

• Data collection has begun to strengthen national advocacy

Early and accurate diagnosis is the first step toward improving life expectancy.

National CF Quality Improvement Strategy

Alongside diagnostics, MECFA finalized a structured national QI program in partnership with:

• Indus Hospital (Karachi)

• Marmara CF Center

• ICFTN Quality Improvement framework

Program Goals:

• Establish fully functioning multidisciplinary CF Centers

• Implement a 2-year Quality Improvement training program

• Improve BMI and FEV1 outcomes

• Integrate into the European CF Registry

• Develop Indus Hospital as a national CF training hub

Strategic Phases:

1. Committee & Drug Access

2. Diagnostic Donation & Training (Completed 2025)

3. 5-Day CF Bootcamp Training

4. 2-Year QI Training & Research

5. National Network Expansion

Primary Target:
Increase BMI and FEV1 by 10% within 3 years.

Pakistan now has:

• Expanded diagnostic capacity in three major cities

• Trained diagnostic technicians

• Structured data collection systems

• A roadmap toward national CF center development

• A defined pathway to Quality Improvement and research publication

Implementation of the full QI program begins in 2026, starting with Indus Hospital and expanding nationally.

QI Program Completed 2025 | National Center Expansion 2026–2027

Jordan represents one of MECFA’s most advanced national Quality Improvement partnerships.

Between 2023 and 2025, MECFA supported and collaborated on a structured, multi-year Quality Improvement (QI) initiative to strengthen CF care across Jordan’s Central and Northern regions.

This program formally wrapped in 2025 and laid the foundation for a sustainable national CF Center Network.

National Quality Improvement Program (Completed 2025)

Working with:

• Prince Hamza Hospital (PHH) – Central Region

• Princess Rahmah Hospital (PRH) – Northern Region

• King Abdullah University Hospital (KAUH)

• Jordan University

• Royal Medical Services

• Jordan CF Friends Charity

• Ministry of Health

The initiative focused on measurable clinical improvement using structured QI methodology.

Core Areas of QI Focus:

• Improving BMI and nutritional outcomes

• Monitoring and improving FEV1

• Infection Prevention & Control implementation

• Expanding sweat testing and genetic diagnostics

• Establishing standardized CF care pathways

• Developing the Jordan CF Registry

• Integrating multidisciplinary team care

• Embedding mental health screening and support

Over two years:

• QI methodology training was delivered to multidisciplinary teams

• Regular twice-monthly meetings were conducted

• Process maps were created for diagnosis, BMI improvement, and genetics

• SWOT analyses were completed across participating institutions

• Jordan-specific CF Care Guidelines were developed

Hospitals now operate with:

• Dedicated CF clinic space

• Multidisciplinary care teams

• Infection control protocols

• Registry participation

• Structured nutritional risk tracking systems

Mental Health & Family Support Integration

A major innovation of the Jordan program was structured mental health integration.

Working alongside local and regional partners:

• Over 199 families were contacted for needs assessment

• Standardized stress screening tools were implemented

• Parent support groups were launched

• Mental health programming was introduced nationally

Families reported high levels of stress, anxiety, and depressive symptoms.
The intervention demonstrated that mental health support is both feasible and highly valued within Jordan’s CF community.

Genetic Testing & National Data Development

A nationwide genetic mapping initiative was launched to:

• Identify CFTR mutations across Jordan

• Develop standardized genetic testing pathways

• Create process maps for sample collection

• Prepare for whole genome sequencing analysis

This represents the first coordinated, multi-center genetic initiative for CF in Jordan.

Ministry of Health Engagement & Therapeutic Access

Through structured collaboration:

• Pancreatic enzymes, fat-soluble vitamins, dornase alfa, and inhaled tobramycin were secured through the Ministry of Health

• Formal discussions were initiated regarding modulator access

• Registry development was strengthened

• Application to the ECFS Registry is underway

Next Phase: Princess Hamza Hospital CF Center Expansion

Implementation 2026–2027 (Funding Dependent)

Building on the completed QI program, MECFA developed a comprehensive proposal in 2025 to formalize and expand Prince Hamza Hospital as a flagship multidisciplinary CF Center.

Planned Expansion Includes:

• Strengthened adult CF services

• Full multidisciplinary staffing model

• Registry optimization

• Continued QI integration

• International training partnerships

The completed QI initiative provides the structural backbone for this expansion.

Jordan now has:

• A functioning national CF collaboration network

• Multidisciplinary QI-trained teams

• Structured BMI and lung function monitoring

• Active mental health programming

• Genetic research underway

• Ministry-level engagement

The Jordan program demonstrates how sustained QI methodology can transform national CF systems.

Developed 2025 | Launch 2026–2027

The MENA CF Adulting & Transition Lab was designed in 2025 as a 12-month scalable pilot.

Focus Areas:

• Micro-learning modules on adult transition

• Peer mentoring system

• Self-management & adherence

• Caregiver support tools

• Adult-care preparation framework

This program responds to:

• Rising life expectancy due to modulator access

• Expanding adult CF population

• Psychosocial transition gaps

The Turkey pilot will serve as a scalable model for Oman, Qatar, Saudi Arabia, UAE and additional MECFA countries.

2026–2028 will focus on:

Pakistan QI implementation & expansion

Jordan CF Center launch

Adult Transition Lab pilot execution

Tunisia network expansion

Continued MOH advocacy

Expansion of MAP (MECFA Access Program)

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Real People. Real Systems. Real Impact.

MECFA does not build parallel care models.
We strengthen state systems.
We train teams.
We generate data.
We advocate nationally.
We scale sustainably.

Because every person with cystic fibrosis deserves access to structured, measurable, life-improving care.