Rare Diseases Associations came together by the help of the Rare Diseases Foundation of Iran on the occasion of the 8th international congress of Rare Disease Day and they shared their problems with authorities in the field of health care.
Rare Diseases Patient Associations accompanied by patients and their families in the presence of authorities in the areas of health, traffic, education expressed their problems.
Farzaneh Fatahi the Secretary of Rheumatism Association(Ankilosing Spondylitis), said:” Ignorance and the high cost of diseases are the biggest problems of patients with AS. We ask the authorities raise awareness of the society in order to deal properly with a rare disease.”
Kazemi Isfahan Immunodeficiency Association Manager thanked the Foundation, which has provided the conditions for dialogue with the authorities and said:”this association could identify three genes of the disease by collaborating with other countries and research activities.”
Kaveh KhademAlhosein Ichthyosis Association Manager said: We expect the society and authorities to understand more Rare Diseases Patients.
Masrour, the Manager of Lupus Association said:” Better measures have to be taken by the relevant organizations for commute and social activities of these patients.” He also added:” The early diagnosis of these diseases causes less damage and controlling.
At the meeting, Dr. Mostafa Jamali the Manager of all NGOs of Health Ministry While endorsing all these problems, said:” These problems must be dealt radically and also he promised the associations that meetings will be held in the future to overcome these problems.