Rare Diseases Foundation of Iran and Ankilosing Spondylitis Society signed an agreement for cooperation
At a meeting attended by Dr Ali Davoudian, Managing Director of the Rare Diseases Foundation of Iran, and Ms. Farzaneh Fatahi, Head of the Board of Directors of the A.S Society as well as a number of the Foundation’s experts an agreement for cooperation was signed for identification of A.S patients and establishment of relations with them accordingly.
To take required and sufficient measures for identification of A.S patients and preparation of a rich data bank of these patents for rendering relevant services was among the main provisions of the agreement.
It was also decided that the two sides to hold relevant scientific, research, cultural, social and supportive seminars and conferences at different periods in order to raise knowledge of people on this kind of disease.
Ankylosing Spondylitis, in short A.S, is a painful and progressive disease that affects joints of the spinal cord .This disease may affect other joints within our body as well as other organs like eyes, lungs, intestine and heart. In 90% cases people mistakes this disease with sciatica or lumber disc. Failure to on time diagnosis of this disease will lead to permanent disability.
Rare Diseases Foundation of Iran has always been doing its best to identify and support A.S patients.
Epidermolysis Bullosa (E.B):
Holding the first gathering of patients affected by EB by presence of patients, their families and specialists and formed the patients association for providing spiritual and physical necessary aid to empower them. This event took place in conference hall of Rare Diseases Foundation of Iran building in 8th of Aban 1389.
Members of board and founder of the society for protection of Neurofibromatosis was identified in 7th of Azar 1395.
Considering the increasing rate of the disease in the country and impose exorbitant cost of financial, physical, social and occupational for these patients, their families and the community, this forum was established to identify, complete database of patients, community education, prevention and support of them.
Neurofibromatosis is a genetic disease that causes tumor growth in the human nervous system. Although these tumors are not malignant, but in five percent of cases there is also the risk of developing malignant tumors. The person involved by mutation or transformation of the parents.
According to statistics, the incidence of type one is 1 in 3000 people and type two is 1 in 2500, it indicates the high prevalence of this disease in our country.
Dr. Ali Davoudian:”Despite the problems we are standing beside forums”.
According to public relations of Rare Diseases Foundation of Iran, a memorandum of understanding signed with association of PKU in Iran.
This forum was formed by Alireza Masoumi years ago but it faces many hardships for providing drugs, milk powder, bread, protein and other social and financial problems so he came to Rare Diseases Foundation of Iran and talked about his problems.
He is father of an affected child, he could identify 2400 children with the disease in the country and established housing cooperative, cooperative production-distribution and the bread for these patients, but the problems exist and he asked for help from Rare Diseases Foundation of Iran.
Thus they signed an MoU with the aim of identifying patients involved in phenylketonuria, pharmaceutical and food-support, do scientific research and make efforts for better and early diagnosis of the disease.
PhenylKetonuria is a rare congenital defect due to accumulation of the phenylalanine amino acid in body fluids and lead to disturbances in the brain, nervous system and skin.