Катрен Стиль
Расширен перечень орфанных заболеваний
Министерство здравоохранения обновило перечень редких (орфанных) заболеваний, добавив в него три новые позиции. Соответствующий документ опубликован на сайте министерства.
В перечень вошли три новых заболевания:
- наследственная тромботическая тромбоцитопеническая пурпура (наследственная ТТП) (синдром Апшоу — Шульмана, наследственный дефицит ADAMTS13);
- синдром Коффина — Сириса;
- первичная гипероксалурия I типа (оксалоз, Primary Hyperoxaluria (PHI)).
Таким образом, общее количество заболеваний, признанных в России орфанными, увеличилось до 270 позиций. Напомним, что редкими, согласно законодательству, считаются заболевания, которые имеют распространённость не более 10 случаев на 100 тыс. населения. Сбором статистики для признания того или иного заболевания орфанным занимается Минздрав.
На основании этого перечня Правительством России формируется другой список — Перечень жизнеугрожающих и хронических прогрессирующих редких (орфанных) заболеваний, приводящих к сокращению продолжительности жизни граждан или их инвалидности. Пациенты, страдающие такими заболеваниями, могут рассчитывать на обеспечение лекарственными препаратами и специальным питанием за счёт государства.
16 сентября 2021
Фото: depositphotos.com
Выпуск: №213, сентябрь 20211641 просмотров
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