Breathing New Hope: How Jordan is Rewriting the Story of Cystic Fibrosis Care

For decades, a parent in Jordan might have heard the words cystic fibrosis and felt fear, isolation, and uncertainty about the future. Today, thanks to an extraordinary partnership between Jordanian hospitals, the Ministry of Health, MECFA, and leading international CF experts, that story is beginning to change.

A Vision for Change

It started with a bold idea—to build a network of world-class cystic fibrosis care centers in Jordan, where children and adults living with CF could receive the same standard of care as patients in the best clinics around the world.

With support from Boston Children’s Hospital and Brigham & Women’s Hospital (Harvard Medical School), Jordan’s healthcare teams began transforming how CF is diagnosed, treated, and supported—not just in one hospital, but across the country.

The Hubs of Hope

• Prince Hamza Hospital (PHH) in the Central Region and Princess Rahmah Hospital (PRH) in the Northern Region have become the beating heart of this new network.

• Each center is now striving to develop into specialized CF centers and working to implement control protocols and effectively help train multidisciplinary teams.
  

More Than Medicine

But cystic fibrosis care is not just about medications and lung function tests. It’s about supporting families through the emotional and mental challenges of the disease. This year, the Jordan CF Friends Charity, supported by Boston Children's Hospital, worked hand in hand with the Syrian American Medical Society to bring mental health support to more than 100 families. Parents have found comfort in support groups, children have received counseling, and caregivers are learning strategies to cope with stress and anxiety. Supported by MECFA, the Jordan CF Friends Charity carried out a one-day CF conference in 2025 with funding from MMDS, Lillium Pharma, with the main funder being Vertex Pharmaceuticals.

Unlocking the Future Through Science

One of the most groundbreaking steps forward is the launch of Jordan’s CF Genetic Testing Program. For the first time, the country will map the unique genetic mutations that cause CF in its population, giving doctors powerful tools to tailor treatments and one day access targeted medications.

At the same time, Jordan’s first national CF registry has been launched to track patient outcomes—a huge step toward better care and life expectancy.

Early Results: Health on the Rise

With improved access to treatments like pancreatic enzymes, vitamins, and inhaled medications, and with physiotherapists and dietitians now embedded in clinics, many children are already showing improved nutrition (BMI) and better lung function (FEV1). These are the very measures that predict longer, healthier lives for people with CF.

The Road Ahead

This is only the beginning. The next chapter will see:

• Expansion of CF care to more hospitals across Jordan.

• Completion of genetic testing for every person with CF in the country.

• Growth of mental health and peer-support networks for families.

• A bold goal — to push the median life expectancy for people with CF in Jordan to 30 years within the next decade.

  
  

How You Can Help

If you'd like to help, you can donate to the "Giving Breath Campaign," where we are raising money to buy nebulizers for CF patients in Jordan. Your support also helps to support the continued education and training of the clinicians, and it supports Jordan CF Charities' annual conference for families.

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