World Day for rare diseases

Tweet

Rare disease known as rare if found in less than one person per 2,000 people, there are about 6000-8000 rare disease around the world, and 350 million patients in the world. 75% of the patient’s children and 30% of these children die before the age of five. This disease is characterized by the diversity of disorders and symptoms associated with them, which is different not only from the disease to another, but - well - from one patient to another patient suffering the same disease; therefore, they constitute a heavy burden on communities. In the twenty-ninth of February each year, does the World Day for rare diseases under the slogan (rare but we are strong you); aim of raising health awareness among patients and the general community and decision-makers about the most important rare diseases in society and its impact on the patient's life, and how to overcome them . World Day focuses on the need for cooperation and solidarity among the rare disease patients and society as a whole and to encourage and support medical research in the field of rare diseases. Target group: Patients with rare diseases and their families Health decision-makers Professionals and health researchers Health associations and interested organizations Society in general Objectives and public messages: Support the right of access to the correct diagnosis through (genetics tests, and newborn screening). Strive to provide the necessary information from the coding and classification, and telemedicine. The development of scientific information in the (medical records and databases, platforms and multiple international researches that focus on clinical research and development of drugs and diagnostic tests, and the training of professionals) Mitigate the social consequences of the disease through the provision of social services specialist that will improve the quality of life of patients and their families, such as answering telephone inquiries on the patients, and services for respite and therapeutic recreational programs. Focus on the provision and quality of health care provided through the creation of a global network of reference centers of expertise, and multidisciplinary care. Improve access to medical care and medicines are not available to patients and that through the reform of the health care system and support the pricing and reimbursement of medicines. Eliminate the isolation of patients and their families and support them and enable them to participate in community building. Will not be able to reach these lofty goals to complete solidarity between patients and society as a whole in the region and the world The Detail of losing weight is in the following link. Just click the link and loss your weight in very few weeks: