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MECFA supports Jordan CF charity with the help of Vertex

In 2022, MECFA launched a program to spread awareness and develop a patient network in Jordan. This program was supported in part by Vertex Pharmacuticals and the CF Foundation.

Jordan pulmonologists joined MECFA at our inception in 2016 and were among the founding members. In 2019, Dr. Samah Awad presented the clinical picture of CF in Jordan at the 3rd Annual Middle East CF Conference detailing the lack of access to drugs, no CF centers or CF teams to manage patients and scarce availability of diagnostics. There is an estimated 500 to 700 diagnosed CF patients but we know hundreds of patient's are dying without being accurately diagnosed or treated for CF.

In 2019, MECFA donated 2 diagnostic systems and 2000 tests to the Ministry of Health and agreed to further provide training to establish a Jordan CF Network of centers across the country. We formed a committee including clinicians, patient and family representatives, Ministry of Health, Minister of Food and Drug and hospital administration. This committee is responsible to further the development of CF centers, support CF teams and provide essential drugs to patients. In 2022 MECFA will donate a further 2 diagnostics systems and testing supplies and begin quality improvement training with participating hospitals.

In 2022 we reached patients and families directly by providing education and helping them form a network of support within Jordan and in the international CF community. Patient and families are given little to no information at diagnosis and are often told because there is no cure, the child will die young. Without access to trained clinicians and essential drugs and equipment, average patient survival in Jordan is below 12.

Currently there is an active patients and family organization in Jordan, but they lacked a professional online presence.

Working with Jordan Cystic Fibrosis Friends Charity, MECFA grew social media channels to help Jordan Cystic Fibrosis Friends Charity connect with their patients, supporters, increase organization awareness, drive education and share clinical research.

MECFA also supported the creation of a website for the Jordan CF Friends Charity, JCFFC. Please visit this website and learn more about CF in Jordan.

MECFA is grateful to Vertex Pharmacutical who focused their funding support on the website development and social media content creation and educational materials in Arabic for patients and families.

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