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
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
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
Contact Us
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© 2021 Debra Russia 2021 | All Rights Reserved
Privacy Policy
This Privacy Policy (“Policy”) describes the order of processing and protection of personal data provided by Subjects to the Charitable Foundation “BELA. Butterfly Children”, a non-commercial organization established and operating under the legislation of the Russian Federation at: Russia, Moscow 105062, Furmanny pereulok, 3 (the “Foundation”) on the website at https://debracongress2021.ru/ (“Website”) in connection with preparation of and holding the online sections of the International DEBRA Congress in 2021 (the “Congress”).
This Policy was developed in compliance with the Russian Federal Law 152-FZ of 27 July 2006 On Personal Data (and in accordance with the requirements of clause 2 of paragraph 1 of Article 18.1 thereof) and the EU regulation.
The following information can be collected with respect to different categories of Subjects in connection with the Congress via the Website:
Participants of the Congress (individual Participants or representatives of legal entities): personal data (full name, gender (optional), age (optional), country and city of residence, company name and position (for representatives), medical status (optional choice between ‘patient’, ‘doctor’, ‘researcher’ or other), photo (optional)), contact information (telephone number, e-mail address, link to social network profile (optional));
Sponsors of the Congress (individuals attending via sponsors): personal data (full name, gender (optional), age (optional), country and city of residence, company name and position (optional), photo (optional)), contact information (telephone number, e-mail address, link to social network profile (optional));
Visitors of the Congress Website leaving information via newsletter mailing form and/or the ‘submit thesis/abstract’ form: full name, e-mail address, link to social network profile (optional), country and city of residence (optional), company name and position (optional), telephone number (optional).
All the information collected with respect to Subjects via the Website is provided by Subjects individually or via legal representatives via registration and other forms on the Website on a voluntary basis. Foundation is not collecting any personal data on Subjects from sources other than the Subjects themselves, with the only two exceptions specified below.
Foundation may also receive data automatically collected by the Website when visited by users, including, among other, cookie files, and other data collected by Yandex.Metrics, Google Analytics and Google Tag manager. Foundation does not store or process this data received automatically.
Foundation has access to part of Subjects’ payment information provided by the ticket and payment platform, namely, full name, total amount, type of ticket(s), last four digits of payer’s card number. This information is used for the purpose of confirming payment for participation and matching participant’s data for registration and access to Congress events. Foundation does not store or further process this data.
Foundation is not collecting any sensitive data (special categories of data or biometric data) via the Website. Any photos provided voluntarily by Subjects in the process of registration for the Congress or participation therein shall be in quality not allowing identification based on biometric data.
When voluntarily providing the above personal data via the Website forms, the Subject grants his/her consent for processing of personal data he/she specifies in the form by clicking on the submission confirmation or ticking specific consent box. The consent thus provided by the Subject shall be given freely, intentionally and in Subject’s interest, and this consent will be specific, informed and conscious, considering this Policy is made available on the Website.
The above personal data is collected by the Foundation for the purposes of preparation for and holding the Congress, as follows:
Information on Participants and Sponsors is collected and processed by the Foundation for the purposes of registration for the Congress, distribution of online access information, distribution of relevant information in newsletters before, during and after the Congress, distribution of Congress materials by the Foundation. Information on the gender and age of Participants and Sponsors is collected to create statistics data that contains no personal information.
Information on other Visitors is collected for distribution of relevant information in newsletters before, during and after the Congress and to account for submitted suggestions/thesis/abstracts during Congress discussions and presentations and for potential use of provided thesis/abstracts on posters and in oral presentations during the Congress and/or in publications after the Congress.
The personal data collected hereunder is collected and stored in Foundation’s CRM, used in registrations for Congress events, distribution of access information, distribution of newsletters and Congress materials. Foundation can use received information for preparation of depersonalized statistics data for its own use, or for provision to Congress sponsors and grant operators, as specified below. Personal data can be processed automatically in the Foundation CRM.
Personal data collected by the Foundation on the Website can be provided by the Foundation to following third parties:
Contractors engaged for organization of the Congress (namely, event platform for registration of participants) can receive personal information and contact information of Participants and Sponsors;
Sponsors of the Congress can receive non-personal statistics data (number of registered participants, number of attendees, number of attendees via sponsors, etc.) based on the personal information collected by the Foundation, as part of performance of Foundation’s obligations under relevant sponsorship contracts;
Grant operator can receive data as part of Foundation’s reporting obligations under the terms of relevant grant provision;
Entities performing publication of Congress abstracts and information, in case abstracts provided by relevant Subject were selected for publication.
When providing the above information to third parties, the Foundation is acting upon its legitimate interests. Subjects’ consent is also deemed obtained for the above transfer of their data to the extent, allowed by the applicable legislation, when submitting personal information via the forms on the Website.
Third parties receiving personal information shall ensure its processing within the limits of the purposes specified hereunder, shall employ sufficient safety and protection measures, shall assist Foundation in processing Subjects’ lawful requests and delete such information upon completion of processing purposes.
Foundation is not transferring any personal data obtained or processed hereunder outside of Russia, and, thus, performs no transborder transfer of personal data. In case any transborder transfer of personal data becomes necessary, Foundation shall obtain relevant Subject’s consent for such transfer.
Foundation is processing personal information collected hereunder under the relevant consents expressly provided by Subjects, as well as for performance of Foundation’s contractual obligations to participants and sponsors of the Congress, and on the grounds of Foundation’s legitimate interests as a charity organization dedicated to research and support of patients suffering from epidermolysis bullosa (EP).
Legal grounds for processing of personal information hereunder are a combination of legal acts, in performance of which and in accordance with which the Foundation is processing personal data, including Civil Code of Russia, Russian Law on Personal Data, and other leg al acts regulating relationships between the Foundation and the Subjects and the Company’s activities.
In addition to the above, the agreements entered into between the Foundation and some of the Subjects and the consents obtained by the Foundation from the Subjects for processing of their personal information, all serve as legal grounds for processing of personal data by the Foundation.
Foundation is employing all necessary security measures and systems, including technical, legal and organizational measures required by applicable law and industry practice to ensure confidentiality and safety of personal data collected hereunder and to protect Subjects’ personal data against unlawful or accidental access, destruction, modification, blocking, distribution, or any other unlawful actions. Unauthorized persons are not allowed access to personal information stored and processed by the Foundation.
All personal data collected by the Foundation hereunder is stored and otherwise processed with the use of databases located in the territory of the Russian Federation.
Foundation holds personal information only for as long as is necessary for the purposes for which the personal data was collected and processed, unless a longer period is required by applicable laws. All personal data collected for the sole purposes of preparing for and holding the Congress will be processed until 31 October 2021 and deleted completely upon the expiration of this term.
The term of processing of personal data collected for the purposes of distribution of Foundation newsletter after the Congress is not limited. Subjects receiving Foundation newsletter can opt out of mailing at any time by following the link included in the Foundation newsletters and unsubscribing. In this case the Subject’s consent to receiving newsletter shall be considered revoked, and the data provided by the Subject shall be deleted.
Subjects are entitled to exercise all of their rights and powers under the applicable legislation, including rights under Article 14 of the Russian Law on Personal Data, namely, rights to request information on the scope of processing of their personal data, and to request deletion, modification or update of their data, as well as to withdraw their consent for processing of personal data. All requests related to personal data processing can be addressed to Foundation’s e-mail address at: info@debracongress2021.ru. To allow processing within the shortest period of time, all notifications on withdrawal of consent should specify “Withdrawal of consent for processing of personal data” in the subject line of the e-mail.
Foundation is entitled to amend this Policy at any time without any liability or notification obligations to Subjects. New version of this Policy shall be considered effective from the date of its publication on this Website, unless otherwise specified therein.
This Policy was developed in compliance with the Russian Federal Law 152-FZ of 27 July 2006 On Personal Data (and in accordance with the requirements of clause 2 of paragraph 1 of Article 18.1 thereof) and the EU regulation.
The following information can be collected with respect to different categories of Subjects in connection with the Congress via the Website:
Participants of the Congress (individual Participants or representatives of legal entities): personal data (full name, gender (optional), age (optional), country and city of residence, company name and position (for representatives), medical status (optional choice between ‘patient’, ‘doctor’, ‘researcher’ or other), photo (optional)), contact information (telephone number, e-mail address, link to social network profile (optional));
Sponsors of the Congress (individuals attending via sponsors): personal data (full name, gender (optional), age (optional), country and city of residence, company name and position (optional), photo (optional)), contact information (telephone number, e-mail address, link to social network profile (optional));
Visitors of the Congress Website leaving information via newsletter mailing form and/or the ‘submit thesis/abstract’ form: full name, e-mail address, link to social network profile (optional), country and city of residence (optional), company name and position (optional), telephone number (optional).
All the information collected with respect to Subjects via the Website is provided by Subjects individually or via legal representatives via registration and other forms on the Website on a voluntary basis. Foundation is not collecting any personal data on Subjects from sources other than the Subjects themselves, with the only two exceptions specified below.
Foundation may also receive data automatically collected by the Website when visited by users, including, among other, cookie files, and other data collected by Yandex.Metrics, Google Analytics and Google Tag manager. Foundation does not store or process this data received automatically.
Foundation has access to part of Subjects’ payment information provided by the ticket and payment platform, namely, full name, total amount, type of ticket(s), last four digits of payer’s card number. This information is used for the purpose of confirming payment for participation and matching participant’s data for registration and access to Congress events. Foundation does not store or further process this data.
Foundation is not collecting any sensitive data (special categories of data or biometric data) via the Website. Any photos provided voluntarily by Subjects in the process of registration for the Congress or participation therein shall be in quality not allowing identification based on biometric data.
When voluntarily providing the above personal data via the Website forms, the Subject grants his/her consent for processing of personal data he/she specifies in the form by clicking on the submission confirmation or ticking specific consent box. The consent thus provided by the Subject shall be given freely, intentionally and in Subject’s interest, and this consent will be specific, informed and conscious, considering this Policy is made available on the Website.
The above personal data is collected by the Foundation for the purposes of preparation for and holding the Congress, as follows:
Information on Participants and Sponsors is collected and processed by the Foundation for the purposes of registration for the Congress, distribution of online access information, distribution of relevant information in newsletters before, during and after the Congress, distribution of Congress materials by the Foundation. Information on the gender and age of Participants and Sponsors is collected to create statistics data that contains no personal information.
Information on other Visitors is collected for distribution of relevant information in newsletters before, during and after the Congress and to account for submitted suggestions/thesis/abstracts during Congress discussions and presentations and for potential use of provided thesis/abstracts on posters and in oral presentations during the Congress and/or in publications after the Congress.
The personal data collected hereunder is collected and stored in Foundation’s CRM, used in registrations for Congress events, distribution of access information, distribution of newsletters and Congress materials. Foundation can use received information for preparation of depersonalized statistics data for its own use, or for provision to Congress sponsors and grant operators, as specified below. Personal data can be processed automatically in the Foundation CRM.
Personal data collected by the Foundation on the Website can be provided by the Foundation to following third parties:
Contractors engaged for organization of the Congress (namely, event platform for registration of participants) can receive personal information and contact information of Participants and Sponsors;
Sponsors of the Congress can receive non-personal statistics data (number of registered participants, number of attendees, number of attendees via sponsors, etc.) based on the personal information collected by the Foundation, as part of performance of Foundation’s obligations under relevant sponsorship contracts;
Grant operator can receive data as part of Foundation’s reporting obligations under the terms of relevant grant provision;
Entities performing publication of Congress abstracts and information, in case abstracts provided by relevant Subject were selected for publication.
When providing the above information to third parties, the Foundation is acting upon its legitimate interests. Subjects’ consent is also deemed obtained for the above transfer of their data to the extent, allowed by the applicable legislation, when submitting personal information via the forms on the Website.
Third parties receiving personal information shall ensure its processing within the limits of the purposes specified hereunder, shall employ sufficient safety and protection measures, shall assist Foundation in processing Subjects’ lawful requests and delete such information upon completion of processing purposes.
Foundation is not transferring any personal data obtained or processed hereunder outside of Russia, and, thus, performs no transborder transfer of personal data. In case any transborder transfer of personal data becomes necessary, Foundation shall obtain relevant Subject’s consent for such transfer.
Foundation is processing personal information collected hereunder under the relevant consents expressly provided by Subjects, as well as for performance of Foundation’s contractual obligations to participants and sponsors of the Congress, and on the grounds of Foundation’s legitimate interests as a charity organization dedicated to research and support of patients suffering from epidermolysis bullosa (EP).
Legal grounds for processing of personal information hereunder are a combination of legal acts, in performance of which and in accordance with which the Foundation is processing personal data, including Civil Code of Russia, Russian Law on Personal Data, and other leg al acts regulating relationships between the Foundation and the Subjects and the Company’s activities.
In addition to the above, the agreements entered into between the Foundation and some of the Subjects and the consents obtained by the Foundation from the Subjects for processing of their personal information, all serve as legal grounds for processing of personal data by the Foundation.
Foundation is employing all necessary security measures and systems, including technical, legal and organizational measures required by applicable law and industry practice to ensure confidentiality and safety of personal data collected hereunder and to protect Subjects’ personal data against unlawful or accidental access, destruction, modification, blocking, distribution, or any other unlawful actions. Unauthorized persons are not allowed access to personal information stored and processed by the Foundation.
All personal data collected by the Foundation hereunder is stored and otherwise processed with the use of databases located in the territory of the Russian Federation.
Foundation holds personal information only for as long as is necessary for the purposes for which the personal data was collected and processed, unless a longer period is required by applicable laws. All personal data collected for the sole purposes of preparing for and holding the Congress will be processed until 31 October 2021 and deleted completely upon the expiration of this term.
The term of processing of personal data collected for the purposes of distribution of Foundation newsletter after the Congress is not limited. Subjects receiving Foundation newsletter can opt out of mailing at any time by following the link included in the Foundation newsletters and unsubscribing. In this case the Subject’s consent to receiving newsletter shall be considered revoked, and the data provided by the Subject shall be deleted.
Subjects are entitled to exercise all of their rights and powers under the applicable legislation, including rights under Article 14 of the Russian Law on Personal Data, namely, rights to request information on the scope of processing of their personal data, and to request deletion, modification or update of their data, as well as to withdraw their consent for processing of personal data. All requests related to personal data processing can be addressed to Foundation’s e-mail address at: info@debracongress2021.ru. To allow processing within the shortest period of time, all notifications on withdrawal of consent should specify “Withdrawal of consent for processing of personal data” in the subject line of the e-mail.
Foundation is entitled to amend this Policy at any time without any liability or notification obligations to Subjects. New version of this Policy shall be considered effective from the date of its publication on this Website, unless otherwise specified therein.
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