June 2019

All-Russian Patient meeting by Sunflower foundation, April 2019

In April 2019, IPOPI President Mrs Martine Pergent was kindly invited by the Sunflower Foundation to attend the All-Russian Patient meeting they organised in Sochi, Russia. More than one hundred patients and families had traveled from all over the country to participate, among them, the board members of our Russian NMO, OPPID.

The programme featured a broad range of topics and the attendees could get information on medical and legal issues, participate in trainings, share with like-minded people and learn how to help others. A special programme for children and teenagers was organised in parallel.

Mrs Irina BAKRADZE, CEO of Sunflower Foundation, brought her perspective on Sunflower’s approach to solving problems to improve the quality of life of patients with PID. Mr Yuri ZHULEV, President of the All-Russian Charity Public Organization of Disabled Persons “All-Russian Hemophilia Society” and Co-Chairman of the All-Russian Union of Public patient associations, also shared his broad experience with the attendees. Mrs Martine Pergent also had the opportunity to give a presentation on IPOPI’s global activities.

Dr Anna CHERBINA, Dr Tatyana LATYSHEVA, Dr Irina KONDRATENKO, Dr Natalia KUZMENKO had very interesting presentations on diagnosis and treatment of PIDs from childhood to adult age addressing also the need for genetic study of the family. This was completed by patients’ experiences in different regions giving their testimonies on the accessibility and the quality of medical treatments for patients with PID.

Finally, during the grand award ceremony, where Mrs BAKRADZE was the “master of ceremony”, Mrs PEREGNT and Mr ZHULEV had the honor of congratulating the 3 winners for their excellent work in their regions.