ORGANISER
ORGANISER
Dear friends!

I am delighted to welcome you and share this special moment with you. It is a great honor and pleasure for me to present the International Congress on Epidermolysis Bullosa (EB) for patients and doctors DEBRA International 2021. This year the Butterfly Children Foundation celebrated its 10th anniversary and it is very symbolic that the annual International DEBRA Congress 2021 will be held in Russia.

Taking up the challenge of the times, we are organizing an online congress for the first time. We will bring together participants from over 100 countries, including patients and countries where DEBRA International is not represented.

For the first time, "butterflies" around the world will have the opportunity to meet and establish communication in a safe space created for them. For doctors and medical students, we have collected up-to-date statistical and scientific data on the treatment and care of patients with EB. The level of invited world experts, the quality of the papers selected by the scientific committee, the number of participants involved and the geographical coverage make our event unprecedented in its scale and effectiveness.


Best wishes,
Alena Kuratova
CEO of DEBRA Russia
DEBRA Russia
Founded in 2011
Key achievements over the years in Russia and the CIS:
  • More than 2 500 patients are being supported
  • More than $16 350 000 have been raised to provide aid to the patients
  • More than 7 000 medical specialists have been trained
  • More than 10 000 medical consultations have been carried out
  • Over 8 tons of bandages and medications have been sent to the patients
  • A national EB patient registry has been developed
For patients with love

Anton is our guiding light. He is a boy with a unique destiny; he has changed the lives of butterfly children in Russia and beyond. He was born almost without skin. Because of his genetic disease, his parents and surrogate mother gave him up. He is the boy thanks to whom we established our foundation, and butterfly children started to receive help and support.

In 2012, the American family of Vanessa and Jason Delgado adopted the boy. They did everything possible for the child to have a comfortable life. Anton lived in America for some wonderful years, and the Delgado family gave him the dignified life he deserved. Unfortunately, on 15 December 2015, Anton passed away.

His mother, Vanessa, wrote on Facebook, "This is the boy who enchanted the world, now safe in God's hands. Anton Ezekiel Delgado, we will love you forever."

Anton's whole journey is a story of courage. He taught us how to change the world for our butterfly children, and that is why all our efforts in the Congress preparation are aimed at ensuring that every patient anywhere in the world can meet, learn and find their way in life with EB.

Sincerely,
DEBRA Russia team
Butterfly Children Foundation
Organising Committee
  • Dr. Julia Kotalevskaya
    Head of Scientific Programme
  • Natalia Skrebtsova
    Head Congress Coordinator
  • Anastasia Gendler
    Head of Communications
  • Oxana Romanchuk
    Sponsorship Lead
  • Irina Sharipova
    Head of International Projects
  • Elizaveta Shchipanova
    Sponsorship and Communications Manager
  • Anya Kalmykova
    Head of Public Relations
  • Ekaterina Nazarova
    Congress Coordinator
  • Alina Nilsson
    Event Producer
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