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مسئول خانه ای.بی از وزیر آموزش و پرورش درخواست وقت ملاقات دارد

سیدحمیدرضاهاشمی درگفتگو با خاص پرس گفت:بچه هایی که با شدت بیماری مواجه هستند یا نمی توانند به تحصیل مشغول شوند و یا خیلی زود از ادامه تحصیل باز می مانند زیرا مدارس کشور، برای پذیرفتن دانش آموزان مبتلا به این بیماری همکاری نمی کنند و ای بی را قابل انتقال می دانند.در حالیکه ای.بی واگیر ندارد.

ما درخواست وقت ملاقات از وزیر آموزش و پرورش داریم و دراین زمینه تلاش خود را هم کرده ایم،امانتوانستیم تاکنون دیداری داشته باشیم.

مسئول خانه ای.بی اشاره کرد:تاکنون ۵۴٠بیمار مبتلا به ای.بی در کشورشناسایی شده و انتظار می رود برمبنای آمارجهانی تعداد این بیماران در ایران بین٨٠٠-١٠٠٠نفر باشد.
مسئول خانه ای.بی، مهم ترین نیاز این کودکان را حضور درفضای عمومی جامعه خواند و افزود:
لازم است فضایی ایجادشود که آنها خانه نشین نشوند و درجامعه حضور داشته باشند

هاشمی تصریح کرد:آنها دارو و درمان خاصی ندارند و بیمارصعب العلاج به شمارمی آیند

آبان ۲۳, ۱۳۹۶

ای.بی، واگیر ندارد

  مسئول خانه ای.بی از وزیر آموزش و پرورش درخواست وقت ملاقات دارد سیدحمیدرضاهاشمی درگفتگو با خاص پرس گفت:بچه هایی که با شدت بیماری مواجه هستند […]
آبان ۲۳, ۱۳۹۶

پیام تسلیت

بسم الله الرحمن الرحیم تنها غرب کشور نبود که لرزید، کل ایران بخاطر غم و اندوه آسیب دیدگان زلزله غرب کشور، لرزید. حادثه دلخراش و ناگوار […]
آبان ۲۱, ۱۳۹۶

صدور مجوز واردات داروی اسپینرازا به ایران

  پدر رادین کودک اصفهانی‌مبتلا به SMA (آتروفی عضلانی نخاعی): تنها راه درمان بیماران SMA داروی “اسپینرازا” است که به صورت آمپولی در کانال نخاعی بیمار […]
آبان ۲۱, ۱۳۹۶

دکترباقرلاریحانی:یکی از خدمات بنیادامور بیماری های خاص،اختصاص خدمات ویژه به بیماران دیابتی است.

دکترباقر لاریجانی درنشست خبری روزجهانی دیابت با اشاره به حمایتهای بنیاد امور بیماریهای خاص از مراکز درمان و کنترل دیابت گفت: امیدواریم این الگوسازی در کشور […]