Recently this year Muscular Dystrophy was recognized as a national priority in Egypt, one of the main targets of the Egyptian national health authorities to provide care and management for Egyptian patients.

The emerge of the novel gene modifying and mutation-specific therapies, have changed our aproach towards MD managment.

MD represents a huge socioeconomic burden on patients, family and community.

Muscular dystrophy (MD) is a group of hereditary muscle diseases marked by progressive wasting and weakness of the skeletal muscles leading to disabilty and early death in some cases as in several forms cardiac and respiratory muscle dysfunction occurs, which leads to early death. With advances in the genetics of muscle disease, the term MD has expanded to include more than six groups, including dystrophinopathies and limb-girdle muscular dystrophy (LGMD).

There is urgent need to advance medical care, awarness and education for the primary care providers for MD patients, on the standards of care, genetic diagnosis, and the emerging therapies.

1- Baban, Anwar et al. “Myocardial and Arrhythmic Spectrum of Neuromuscular Disorders in Children.” Biomolecules vol. 11,11 1578. 25 Oct. 2021, doi:10.3390/biom11111578.
2-Santos, João et al. “Acute heart failure and bradyarrhythmia in a young male-what hides beneath the surface?: a case report.” European heart journal. Case reports vol. 5,10 ytab413. 9 Oct. 2021, doi:10.1093/ehjcr/ytab413.

MYO-CARE NATIONAL FOUNDATION is an Egyptian non-profit NGO working in the field of muscular dystrophy to optimize care and access to therapy for muscular dystrophy patients in the region. We were founded in 2019 as an Egyptian non-profit NGO governed by a board of directors of national and international NMD experts.

  • مؤسسة ضمور العضلات هي مؤسسة غير ربحية مقيدة بوزارة التضامن برقم ١١١٦٣

    .رعاية صحية و علاج لضمور العضلات

    Mission

    1. Provide education, and raise awareness among medical professionals on international standards of care.
    2. – Provide diagnosis, carrier testing, and multidisciplinary care for MD patients & their families in our affliated specialized medical center in Saida Nafisa hospital.
    3. Promote research to understand the genotype-phenotype characteristics of Egyptian MD patients and support translational research
    4. Maintain the patient registry to facilitate readiness to clinical trials and patients’ access to the new genetic therapies. 

    The Medical center

    In 2021 developed a partnership with Egyptian University to establish a specialized medical center for muscular dystrophies as part of the rare disorders project in the Saida Nafisa community hospital, which is expected to be open for patients for free in January 2022. 

    Egyptian Neuromuscular Registry

    Myo-Care foundation governs the Egyptian neuromuscular registry holding more than 2400 Muscular Dystrophy patients including 1500 DMD patients and 244 LGMD patients.

    Arabic translation for Neuromuscular patients for COVID-19

    https://www.worldmusclesociety.org/news/view/150

  • مؤسسة ضمور العضلات هي مؤسسة غير ربحية مقيدة بوزارة التضامن برقم ١١١٦٣

    .رعاية صحية و علاج لضمور العضلات

    Mission

    1. Provide education, and raise awareness among medical professionals on international standards of care.
    2. – Provide diagnosis, carrier testing, and multidisciplinary care for MD patients & their families in our affliated specialized medical center in Saida Nafisa hospital.
    3. Promote research to understand the genotype-phenotype characteristics of Egyptian MD patients and support translational research
    4. Maintain the patient registry to facilitate readiness to clinical trials and patients’ access to the new genetic therapies. 

    The Medical center

    In 2021 developed a partnership with Egyptian University to establish a specialized medical center for muscular dystrophies as part of the rare disorders project in the Saida Nafisa community hospital, which is expected to be open for patients for free in January 2022. 

    Egyptian Neuromuscular Registry

    Myo-Care foundation governs the Egyptian neuromuscular registry holding more than 2400 Muscular Dystrophy patients including 1500 DMD patients and 244 LGMD patients.

    Arabic translation for Neuromuscular patients for COVID-19

    https://www.worldmusclesociety.org/news/view/150