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The Parliamentary Health and Environment Committee in a meeting with the Chairman of the Administrative Committee of the rare storage diseases Society , Eng. Emad Momani discussed the reasons and obstacles to providing treatment for patients with rare genetic storage diseases.
The head of the Health and Environment Committee, IBrahim Bani Hani, called on the government to find solutions to treat these diseases as its very serious diseases.
He pointed out that "parliamentary health" will follow up on this issue and address all concerned parties to provide treatment for people suffering from these diseases.
He stressed the necessity of intensifying efforts between the Ministry of Health and the Society to provide the possibilities by various means available, due to the high cost of the treatment . For his part, Momani said that these diseases are rare diseases in Jordan, where the number of infected people is 50 people, explaining that the cost of treatment is high and may exceed 3.5 million Jordanian dinars annually. He pointed out that there are foreign companies have shown their willingness to provide appropriate treatment for such diseases, and prices are lower than other companies.
The diseases like ( Guacher-MBS-Pompe-Fabri ) are among the most rare storage diseases in Jordan ( he side ), which may affect people due to defects in the genetic enzymes in the human body.