Patient’s Registry
A registry contains personal and medical information on healthy individuals or patients. Data on a predefined population of patients are being recorded aiming at facilitating research and therapy development.
Some of the information stored in a registry could be among others:
– Personal characteristics of the patient: age, gender etc
– Disease history of the patient and current diagnosis (including, if relevant, the specific gene or chromosomal mutation that has contributed to the development of the disease)
– Treatments and medication given
– Clinical outcomes of treatment
Each country has its own registry to be able to track & help patients manage the disease within its borders. For the Egyptian Registry, please visit www.egyptianneuromusculardregistry.com.
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Expert Egyptian AMD
Vision
Mission
Values
- Empathy: we can feel the suffering of muscular dystrophy community in Egypt.
- Leadership: we aim to be the reference and source of awareness for patients and their caregivers.
- Empowerment: we work hard to provide every MD patient with essential tools to live a powerful life.
Goals
- Expanding the association activities by extending arms across the whole country to make it easier for the patient to reach support wherever they are.
- To provide suitable employment opportunities that is not less than the minimum wage or appointment in accordance with the educational qualifications.
- Allocation of housing units within the provinces for those with special needs and the necessary amenities.
- Building a medical building on a global level to receive and treat cases of patients with muscular atrophy and the disabled.
- Work on the issuance and amendment of legislation for patients with muscular atrophy and disabled in accordance with the current circumstances.