Interregional Union of Life Help for Mentally Handicapped Persons
Goal area 6:
ensuring access to health care for all
Goals:
• protect and promote health and wellbeing for all
• promote sexual and reproductive Health Rights
• prevention of 4 most common NCDs (cancer, cardiovascular, chronic respiratory and diabetis)
• ensure equal rights for patients with rare (orphan) diseases
Rare diseases became a real challenge to the world’s community due to high unmet need caused by absence of interest from pharmaceutical industry to develop treatment due to small number of affected patients on the one hand and high cost of treatments already available leading to high financial burden to the national economies on the other. Such patients representing the minority of world’s population, but being an equal part of world community, deserve equal approach as compared to the most common NCDs because for this category of patients available treatment equals to available life. Thus the problem of equal rights for patients with RDs is not pure medical, but more ethical and deserves being represented as one of the priorities for sustainable development goals
• % of Nations adopted National Rare Disease Plans (target reflects the number of special programs on RDs supported by national governments which might include definition of rare disease, medical support to RD patients, equal access to treatment, their rehabilitation and integration to the society and needed to assess the efforts of Government to provide support to such patients)
• % of patients provided with means of treatment (target shows the number of patients provided with available treatment=given possibility to live and needed to assess the equality of access to medical care for all and is in line with the goal area)
• amount of scientific research to find treatment for fatal diseases (target shows development of new treatment options and is needed to stimulate scientific research for illnesses considered to be mortal)
ensuring access to health care for all
Goals:
• protect and promote health and wellbeing for all
• promote sexual and reproductive Health Rights
• prevention of 4 most common NCDs (cancer, cardiovascular, chronic respiratory and diabetis)
• ensure equal rights for patients with rare (orphan) diseases
Rare diseases became a real challenge to the world’s community due to high unmet need caused by absence of interest from pharmaceutical industry to develop treatment due to small number of affected patients on the one hand and high cost of treatments already available leading to high financial burden to the national economies on the other. Such patients representing the minority of world’s population, but being an equal part of world community, deserve equal approach as compared to the most common NCDs because for this category of patients available treatment equals to available life. Thus the problem of equal rights for patients with RDs is not pure medical, but more ethical and deserves being represented as one of the priorities for sustainable development goals
• % of Nations adopted National Rare Disease Plans (target reflects the number of special programs on RDs supported by national governments which might include definition of rare disease, medical support to RD patients, equal access to treatment, their rehabilitation and integration to the society and needed to assess the efforts of Government to provide support to such patients)
• % of patients provided with means of treatment (target shows the number of patients provided with available treatment=given possibility to live and needed to assess the equality of access to medical care for all and is in line with the goal area)
• amount of scientific research to find treatment for fatal diseases (target shows development of new treatment options and is needed to stimulate scientific research for illnesses considered to be mortal)