Drug Security Forum

Regular Discussion about Irregular Illness: Prospects for Drug Therapy

15 Jun , 10:00–11:30
‘Ensuring Drug Security’ Russian Pharmaceutical Forum
Pavilion G, conference hall G2

The creation of the Circle of Kindness Foundation has changed the way NPOs, the state, and business interact, led to a redistribution of resources between state and charitable programmes, and forced a rethinking of the social contract in place for children with serious and rare diseases. The Foundation’s appearance on the scene has altered the dynamic governing relations between the ministry concerned, regional health authorities, medical institutions, and public organizations. The creation of the Circle of Kindness Foundation has also affected the market for expensive drugs and given rise to new opportunities in the country’s pharmaceutical industry: the Foundation consistently purchases a significant amount of new, expensive, innovative drugs. All of these factors are constantly presenting the Foundation and, more broadly, society with new challenges, risks, and demands. What impact does the new environment have on the ethical foundations underlying the activities of healthcare professionals? How can the decision-making process be improved to better care for children with serious and rare diseases? What opportunities are opening up for Russian pharmaceutical manufacturers and how quickly and effectively will they be able to take advantage of these opportunities? How can we build more effective and harmonious relationships between the Circle of Kindness Foundation, NPOs, and patient organizations to better serve patients with rare and serious illnesses?

Alexander Tkachenko, Archipiest; Chairman of the Committee for Philanthropy, Civic Education, and Social Responsibility of the Civic Chamber of the Russian Federation; Chairman of the Board, Circle of Kindness Foundation

Yuriy Zhulev, Co-Chairman, All-Russian Union of Patients
Irina Kirkora, Deputy Chairman of the Presidential Council for the Development of Civil Society and Human Rights
Sergey Kutsev, Director, Research Centre for Medical Genetics; Chief External Expert in Medical Genetics of the Ministry of Health of the Russian Federation (online)
Aleksandr Rumyantsev, Scientific Director, Dmitry Rogachev National Research Centre (online)
Elena Khvostikova, Head, Genome Patient Care Center
Oleg Ergashev, Vice-Governor of Saint Petersburg