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Middle East CF Association
2019/20 Impact Report
Improving Middle East CF patients health outcomes
Where we focused in 2019/20
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Cystic Fibrosis remains under diagnosed in most countries in the Middle East and Africa. There are large numbers of patients who are being treated for symptoms but never accurately diagnosed. Turkey is the only country in the region with New Born Screening and genotyping for CF. Most countries have very little if any CF medication and equipment needed to manage the disease and allow patients to live a human and productive life. We focus on diagnostics, lobbying and the development of CF centers.
The Middle East current availability of accurate CF diagnosis indicates that without a systematic and sustained intervention, CF rapidly leads to death, with a high economic and emotional cost to patients and their families. Misdiagnosis and lack of confirmed cases of CF make it difficult to convince health ministries to include CF care in their annual budgets. Many countries in the Middle East and Africa lack any form of CF diagnostic equipment and testing is not supported by health programs.
Education is KEY to establishing CF Centers staffed with qualified CF care professionals. The We Care Program supports training for clinicians, allied health and microbiologists at MEFCA approved CF Centers. Participants education is based on US CF Standards of Care with the goal to reach optimal care with resources available. The long term goal is to have at least one CF Center staffed with a trained CF team in every MECFA member country.
The management of CF includes a daily need for medication and special equipment to manage the disease. Often these therapies are expensive, unavailable in the country and overlooked by health authorities. Countries partnering with MECFA will benefit from support lobbying health officials to provide basic medication and equipment.
Countries where we had impact in 2019
Giving CF patients a fighting chance
At MECFA, we believe that even small acts of generosity can create lasting change in CF patient's lives, their families, and their communities. Ultimately, transforming the future of patients in the region.
Our extraordinary beginning proves the point. Four years ago, in 2016, a group of dedicated pulmonologists took up the collective challenge to improve care for CF patients in the MENA region. In fact, they were so compelled by the suffering of patients, they had privately begun to support the most vulnerable by offering free care and donating essential drugs. They were responsible for organizing the first CF conference ever held in the Middle East in 2007. They had boldly taken on their health ministries lobbying on behalf of patients and fought to develop CF centers in their hospitals. Our founding clinicians paved the way for a brighter, healthier, and happier future of CF patients in MENA. Their cause was saving patients and relieving suffering. A cause that soon became the first regional CF focused charity and continues to inspire our work to this day. In an ever-changing world, thanks to supporters like you, we’re changing hundreds of CF patients' lives!
So how many lives did we change last year? In 2019, we educated over 300 clinicians from 8 countries, including a pivotal pilot education exchange program that will lead to the first US standard CF Center in the region. Hundreds of patients who are treated in Centers where we provided training for CF care teams have improved health outcomes. Our focus on providing diagnostics will ensure early diagnosis and early intervention for thousands of patients. We continue to advocate for change on behalf of all patients for access to essential therapies and specialized care. Patients whose lives are better, whose futures are brighter, because of your actions, your generous support, your commitment to our shared cause.
In gratitude, we invite you to review this special annual report, which not only highlights our 2019 achievements and reports on our financials but also recognizes our supporters and commemorates our year of success.
We look forward to 2020 and hope you will continue with us on our journey to help people with Cystic Fibrosis in the Middle East and Africa.
On behalf of MECFA,
Christine Noke, CEO
Medical and Scientific Committee
Prof. Ibrahim Janahi, Qatar
Dr. Nisreen Rumman, Palestine
Prof. Hussein Alkindi, Oman
Prof. Bulent Karadag, Turkey
A Year in Pictures
The 3rd Middle East CF Conference MECFC 2019
took place in Istanbul at the Sisili Marriott Hotel on March 21-23rd. The conference theme was "Working towards Optimal Care," and covered topics such as EU Standards of CF Care, clinic cross-contamination protocols, genotyping for standardized care, and treating patients without access to essential drugs. Pre-conference workshops were added to this year's agenda covering diagnosing CF, nutrition, and physiotherapy in CF. Over 300 delegates from the region and internationally attended and the conference was supported by 17 companies. Visit our website for MECFC 2019 presentations and abstract submissions.
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The MaMi project
is a pilot and feasibility project to establish a care center at the Marmara University Hospital in Istanbul, Turkey. The Marmara CF Center will be able to manage all clinical aspects of patients with CF, following the best evidence-based care guidelines and adapting them to Turkey’s setting. The program is training a multidisciplinary expert CF Team from Marmara CF Center. The training is occurring under the direct and continuous supervision of the University of Michigan (UM) CF Center in the USA. The program focuses on quality improvement (QI) projects with the UM CF team working closely with the University of Marmara (UoM) CF Center. Areas of QI work include: improving BMI, improving pulmonary function testing, implementing Infection Prevention and Control (IP&C) in the center. Learn more
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Diagnostic Pilot Program
In the Middle East, there are vast differences in the availability of adequate health care, particularly in Africa. The main differences are financial resources available to the health ministries across the region. CF, as a rare disease and until recently believed to only exist in Caucasians, is not supported in countries that have large populations such as Egypt and Jordan.
In most MENA countries, CF is still vastly underdiagnosed. Symptoms are treated but diagnosis never confirmed, or children are clinically diagnosed with CF but are not suffering from the disease. Misdiagnosis and lack of confirmed cases of CF make it difficult to convince health ministries to include CF care in their annual budgets.
The goal of this pilot diagnostic project is to donate 10 CF diagnostic systems, 10,000 tests to 10 pediatric hospitals, and provide onsite training for technicians and clinicians participating in the program. MECFA will also invite clinicians enrolled in the program to attend a half-day deep dive diagnostic workshop taking place at the 4th Middle East CF conference in Muscat Oman.
The long term goal of this program is to continue donating diagnostic systems and testing supplies to
government-funded pediatric hospitals in the region.
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MECFA at the NACFC 2019, Nashville USA
MECFA CEO, Christine Noke, and medical committee members, Dr. Nisreen Rumman, Prof. Bulent Karadag attended the North American CF Conference on behalf of MECFA. The NACFC 2019, held in Nashville, Tenn., offered the opportunity for networking with US clinicians interested in supporting MECFA taking part in our educational programs. MECFA was warmly welcomed by Dr. Preston Campbell, CEO of the CF foundation. The MECFC 2020, our upcoming annual conference was referenced in the NACFC program.
The North American Cystic Fibrosis Conference (NACFC) provides a collaborative and educational forum for CF professionals to help advance CF research and care. This annual meeting brings together scientists, clinicians, and caregivers from around the world to discuss and share ideas on the latest advances in CF research, care and drug development and to exchange ideas about ways to improve the health and quality of life for people with CF.
The NACFC 2020 will be held in Phoenix, Arizona, visit the conference website to learn more.
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MECFA represented at the 6th Egyptian Congress of Pediatric Pulmonology 2019
The ECPP is the largest Arabic congress entirely devoted to Pediatric Pulmonology. Prof. Bulent Karadag and Prof. Hussein AlKindy MECFA medical committee members and Prof. Samya Nasr, MECFA international advisor, attended to ECCP representing MECFA and CF in the Middle East.
During four consecutive days, there were leading specialists and researchers from all parts of the world, bound by the common purpose of improving the management of our young patients. The congress encompassed a number of themes in Pediatric Pulmonology, including but not limited to Asthma, Cystic Fibrosis, Respiratory Infections in children, Pulmonary Hypertension, Respiratory Allergies, Sleep Disorders, Primary Ciliary Dyskinesia, Childhood interstitial lung disease, Pulmonary Intensive Care, Pediatric Thoracic Surgery and Medical Education. To learn more visit the ECPP website.
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MECFA Launched the GIVING BREATH CAMPAIGN
Every day, all over the world, CF patients use their nebulizers for inhalation therapy that helps them breathe and live healthier. Nebulizers are used to inhale life-saving antibiotics and airway clearance therapies. Without nebulizers, patients have little chance of fighting deadly infections and maintaining healthy lung function.
In the Middle East, hundreds of children do not have access to quality CF specific nebulizers which leads to a higher frequency of lung infections and poor lung function. They are struggling for every breath they take.
The Giving Breath Campaign raises funds to purchase PARI Turboboy SX nebulizers for CF patients in the MENA region. We turn your contribution into a gift of breath for CF patients in need.
In 2019 Zahra Al-Khateeb, a MECFA volunteer took up the challenge to run a marathon in Palestine in support of the Giving Breath Campaign. Zahra's goal is to raise enough to give every CF patient in Palestine a Turboboy SX nebulizer.
Support Zahra's run and give breath to CF patients in Palestine.
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MECFA supported Dr. Nisreen Rumman
to participate in a Pediatric Leadership Program organized by Havard Medical School and University College London.
Dr. Nisreen Rumman, a MECFA founding member, is working to build a CF team at Caritas Baby Hospital in Bethlehem, where most Palestinian CF patients are followed up. Dr. Rumman is a pediatric pulmonologist treating over 160 CF patients. MECFA realizes that healthcare centers in today’s world cannot be run by clinical experience alone, management and leadership skills became a necessity to develop and advance such centers. MECFA supported Dr. Rumman to attend the Pediatric leadership program (PLP).
This program is a one-year certificate program that has been developed by the Harvard Medical School, the USA, and University College London Great Ormond Street, England. It is designed for medical professionals who want to become leaders in pediatrics and provides them with tools to foster innovation at their respective organizations. Dr. Rumman will complete the course in 2020. Learn more about this program here.
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Advocating for Patients
MECFA worked with our members to open discussions with Ministries of Health in Jordan and Palestine. We used donations of diagnostic equipment and support for CF team training to initiate talks. In Jordan Dr. Samah Awad, MECFA member, worked with the Ministery of Health to form a CF Committee working to open access to essential drugs for hundreds of CF patients in Jordan. Currently, only pancreatic enzymes are available in Jordan which leads to low life expectancy and poor quality of life for CF patients.
In Palestine, Dr. Rumman has initiated discussions with the Ministry of Health to support CF patient's care at the Caritas Baby Hospital. In addition, Dr. Rumman, with the support of MECFA and our network are requesting inhalation antibiotics, mucolytics, and CF vitamins for CF patients in the West Bank and Gaza.
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Our 2019 Financials
As we celebrate the 4th year of change for people with CF in the Middle East, we’re pleased to report that some things remain steadfast, including our financial strength and continued growth. We are proud of our progress with economically sound projects and the continued transparency of our financial position.
Our donors are the driving force behind our progress, enabling us to make a real difference in the lives of children affected by Cystic Fibrosis
Thanks to the generosity of the supporters below, our evidence-based care, innovative pilot programs, free educational resources, and awareness campaigns have reached hundreds of patients, families, clinicians, and hospitals across the Middle East and Africa.
Cystic Fibrosis Foundation
Foundation Support
The Cystic Fibrosis Foundation is dedicated to improving the daily lives of people with cystic fibrosis. Visit their website to learn more CFF.org.
Al Qamra Holding
Private Support
Al Qamra holding is a leading business conglomerate in the state of Qatar with a history of over a decade successfully operating in the nation. Visit their website to learn more al-qamra.com
Corporate Sponsors
Pharmacutical Donors
Each year MECFA hosts an annual CF Conference in the Middle East. In 2019 we welcomed new and continued support from vital CF pharmaceutical companies in the region.
Individuals
Public Donations
Through the Giving Breath Campaign, MECFA received thousands of dollars in public donations. We are incredibly grateful to individuals who donate to help people with CF in the Middle East. If you would like to support the Giving Breath Campaign you can donate here.
Volunteers
Public Support
Volunteers play a vital role in MECFA fundraising and programs. Without their dedication to helping people with CF we would be unable to meet our goals. If you are interested in volunteering for MECFA, email info@mecfa.org to learn how you can join the fight against CF.