From HAE Russia

We bring good news for juvenile HAE patients and their parents as children with HAE will soon begin receiving advanced pathogenetic medications from the Circle of Good Foundation.

The Circle of Good Foundation is a public non-budgetary charitable organization. Established in January 2021 by presidential decree, the Foundation aims at supporting children with severe life-threatening and chronic diseases, including rare (orphan) diseases. Founded by the Russian Ministry of Health, the Foundation provides assistance to Russian children under the age of 18 diagnosed with diseases included in the Foundation’s List of Diseases. 

HAE refers to orphan diseases. Until now, in the regions of Russia children with such a diagnosis have not always and regularly been provided with effective medicines intended to treat HAE.

In September 2021 the Board of Directors of HAE Russia applied to the Circle of Good Foundation requesting that juvenile patients with HAE be included in the Foundation’s List of Diseases. On 7 October 2021 the Expert Council of the Circle of Good decided to add the underage patients and children diagnosed with HAE to the list of diseases supervised by the Foundation. 

Elena Viktorovna Bezbozhnaya, Chairman of HAE Russia, considers this decision very significant: the Circle of Good assumed care for our children diagnosed with HAE, included the HAE disease in the Foundation’s List of Diseases, which appeared good news for us. Thus, patients with HAE will be provided with medications until the age of 18. And now, upon requests from doctors, the Foundation will purchase advanced medications for underage patients.

The first pathogenic long-term therapy for HAE – that is lanadelumab/Takhzyro – has joined the Circle of Good.