PROGRAMME OVERVIEW
PROGRAMME OVERVIEW
Healthcare professionals, researchers, scientists from all over the world gather together to share experience, get practical advice and discuss advanced technologies and innovative research in the field of EB.
Programme at a glance by days
Programme at a glance by days
DAY 1
16 September (Thursday)
Opening Ceremony
Basic and preclinical research
Natural history
DEBRA Management Workshops
(DEBRA groups only)
(DEBRA groups only)
Prof.
Jemima Mellerio
Jemima Mellerio
Prof.
Cristina Has
Cristina Has
Associate Prof.
Anna Bruckner
Anna Bruckner
Dr.
Anna Martinez
Anna Martinez
Chair:
Prof. Jemima Mellerio
Prof. Jemima Mellerio
Section speakers:
Chairs:
Prof. Johann Bauer, Prof. Peter Marinkovich
Prof. Johann Bauer, Prof. Peter Marinkovich
Dr.
Andrew South
Andrew South
Dr.
Isin Sinem Bagci
Isin Sinem Bagci
Dr.
Peter C. van den Akker
Peter C. van den Akker
Dr.
Joanna Jackow
Joanna Jackow
Section speakers:
* - to be approved
Ph.D. Alexander Nyström
DAY 2
17 September (Friday)
Guideline Session (by invitation only)
Clinical trials 1
EB International experience and International Support
Patients and patient organisations are welcome!
Patients and patient organisations are welcome!
Clinical trials 2
Workshops for medical participants: professional forums (by invitation only)
Dr.
Su Mar Lwin
Su Mar Lwin
Prof.
Peter Marinkovich
Peter Marinkovich
Dr.
Alain Hovnanian *
Alain Hovnanian *
Prof.
Eli Sprecher
Eli Sprecher
Chairs:
Prof. Leena Bruckner-Tuderman, Prof. Helmut Hintner
Prof. Leena Bruckner-Tuderman, Prof. Helmut Hintner
Section speakers:
Prof.
Dedee Murrell
Dedee Murrell
Chairs:
Prof. Eli Sprecher, Dr. Su Mar Lwin
Prof. Eli Sprecher, Dr. Su Mar Lwin
Section speakers:
Prof.
Amy Paller
Amy Paller
* - to be approved
DAY 3
18 September (Saturday)
Clinical care and management
Targeting therapeutic challenges
Chairs:
Prof. Dedee Murrel, Prof. Martin Laimer
Prof. Dedee Murrel, Prof. Martin Laimer
Chairs:
Associate Prof. Anna Bruckner, Dr. Anja Diem
Associate Prof. Anna Bruckner, Dr. Anja Diem
Ph.D.
Gregory Zinoviev
Gregory Zinoviev
Dr.
Alexander Pleshkov
Alexander Pleshkov
Section speakers:
Ph.D.
Tariq Khan
Tariq Khan
Section speakers:
MD.
Kenneth Goldschneider
Kenneth Goldschneider
Prof. Dr. Dr.
Martin Steinhoff
Martin Steinhoff
Dr.
Christine Chiaverini *
Christine Chiaverini *
Socialising, Education and Work possibilities opportunities talks
DEBRA Management Workshops
(DEBRA groups only)
(DEBRA groups only)
* - to be approved
Dr.
Antonia Reimer
Antonia Reimer
DAY 4
19 September (Sunday)
Multidisciplinary care
Keynote 3: computer assisted patient care (TM, AI imaging)
Closing Ceremony
Dr.
Anja Diem
Anja Diem
Chairs:
Dr. Anna Martinez, Prof. Nikolay Murashkin
Dr. Anna Martinez, Prof. Nikolay Murashkin
Section speakers:
Dr.
Alexander Pleshkov
Alexander Pleshkov
Margarita Geht
Medics to Patients Network and Q&A by country based on a timezone
Socialising, Education and Work possibilities opportunities talks, Family Talks
Dr.
Anna Martinez
Anna Martinez
Scientific Programme Committee
Professor
Johann Bauer
Johann Bauer
Head of SPC
Paracelsus Medical University,
Austria
Paracelsus Medical University,
Austria
Professor
Martin Laimer
Martin Laimer
Secretary of SPC
Paracelsus Medical University,
Austria
Paracelsus Medical University,
Austria
Professor
Cristina Has
Cristina Has
University of Freiburg,
Germany
Germany
Professor
Helmut Hintner
Helmut Hintner
EB House Austria,
Austria
Austria
Professor
Peter Marinkovich
Peter Marinkovich
Stanford University,
United States
United States
Professor
Jemima Mellerio
Jemima Mellerio
St John's Institute of Dermatology, Guy's & St. Thomas' NHS Foundation Trust,
United Kingdom
United Kingdom
Associate Professor
Anna Bruckner
Anna Bruckner
University of Colorado,
United States
United States
MD, PhD
Julia Kotalevskaya
Julia Kotalevskaya
Moscow Regional Research and Clinical Institute (MONIKI),
Russia
Russia
Professor
Nikolay Murashkin
Nikolay Murashkin
National Medical Research Center for Children's Health,
Russia
Russia
Chairs
Professor Johann Bauer
Dr Bauer is a board-certified dermatologist, Professor and Chair at the Department of Dermatology, University Hospital Salzburg since 2014. Here he is Director of the EB House Austria, the national centre for epidermolysis bullosa patients in Austria. He has long-standing experience in molecular diagnosis, management and research on skin biology / blistering diseases, skin ageing and neurobiology of the skin. His main interest is to develop novel therapies for patients suffering from the blistering skin disease epidermolysis bullosa.
Professor Peter Marinkovich
Associate Professor of Dermatology, and one of the founding members of the Program in Epithelial Biology, Stanford University School of Medicine. His work focuses on the biology of the basement membrane and in the translational development of molecular therapeutics for epidermolysis bullosa. He was a former attending physician in the National EB Registry from 1995 to 2000, and is the Bullous Disease Clinic Director at Stanford University. His basic science and clinical research teams are currently engaged in several ongoing trials of gene therapy for epidermolysis bullosa.
Professor Jemima Mellerio
Prof. Mellerio’s clinical expertise is a genetic skin disease, notably EB, other genetic skin diseases and paediatric dermatology. Her research activities focus on novel translational therapies for genodermatoses such as cellular and gene therapy approaches for EB and other genetic skin diseases.
St John's Institute of Dermatology, Guy's & St. Thomas' NHS Foundation Trust, United Kingdom
St John's Institute of Dermatology, Guy's & St. Thomas' NHS Foundation Trust, United Kingdom
Professor Leena Bruckner-Tuderman
Professor and Chair of Dermatology at the Medical Center – University of Freiburg. Her research deals with the biology of basement membranes and the extracellular matrix, with molecular causes and disease mechanisms of genetic and acquired skin fragility disorders, as well as with the development of novel, biologically valid therapies. Her experience includes research and clinical work in Finland, the USA, Switzerland and Germany as well as engagement in national and international organisations. She has been the president of the European Society for Dermatological Research, the German Dermatological Society and the vice-president of the German Research Foundation.
Professor Helmut Hintner
After his medical education in Innsbruck (Austria) and a 1,5 year residence at the National Institutes of Health in Bethesda (USA), Helmut Hintner was the head of the Department of Dermatology of the Paracelsus Medical University in Salzburg from 1992 until his retirement in 2014. He was involved in the establishment of the EB House Austria in Salzburg and co-founder of EB-CLINET and from 2011 - 2014 he was the Austrian Member of the EU Committee of Experts on Rare Diseases (EUCERD), which was responsible for the development of Centres of Expertise and European Reference Networks. Helmut Hintner is also co-author of the book “Life with Epidermolysis Bullosa (EB): Etiology, Diagnosis, Multidisciplinary Care and Therapy (available in English, Spanish, Chinese and Russian).
Professor Eli Sprecher
Prof. Sprecher’s research focuses on the genetic basis of skin diseases. His group aims to understand the molecular genetics of both simple and complex traits, decipher their pathogenesis, and then attempt to translate this new knowledge into innovative therapeutic tools.
Dr. Su Mar Lwin
Dr. Lwin’s research focuses on translational therapeutics; she is currently leading a DEBRA-funded project to develop spray-on gene therapy for RDEB. She further expands her interests in unravelling complex mechanisms underlying EB and wider clinical applications of advanced therapeutics.
Professor Dedee Murell
Prof. Murell’s current research focuses on developing and validating clinical outcome measures for EB and Autoimmune blistering diseases, which have enabled clinical trials to proceed in these orphan diseases.
Professor Martin Laimer
Professor of Dermatology and Deputy Head of the Department of Dermatology and Allergology, University Hospital of the Paracelsus Medical University Salzburg. He additionally heads the Clinical Study Center of the EB House Austria, a designated national center of expertise for Epidermolysis bullosa within the ERN (European Reference Network) Skin. Dr Laimer works both clinically and scientifically in the field of rare diseases, with special interest in Epidermolysis bullosa, for almost 20 years. In 2014 he was appointed co-chairman of the Executive Board of Directors of Salzburg Centre for Rare Diseases and further directs the Austrian Academy for Dermatological Education since 2018. In 2020 he was elected Secretary General of the Austrian Society of Dermatology and Venereology.
Associate Professor Anna Bruckner
University of Colorado, United States.
Dr. Anja Diem
Dr. Diem is closely involved in clinical research, coordinates multidisciplinary collaboration at local, national and international levels, and is author or co-author of numerous scientific and educational publications, including a patient-oriented, multilingual “EB handbook”.
Dr. Anna Martinez
Dr. Martinez is a major contributor to research in the field of paediatric dermatology, in particular EB. She is Chief Investigator and Principal Investigator on a rolling programme of clinical trials into novel therapies in paediatric dermatology.
Professor Nikolay Murashkin
National Medical Research Center for Children's Health, Russia.
Speakers
Dr.
Peter C. van den Akker
Peter C. van den Akker
Dr.
Alain Hovnanian
Alain Hovnanian
Dr.
Christine Chiaverini
Christine Chiaverini
Dr. Andrew South
Associate Professor in the Department of Dermatology and Cutaneous Biology at Thomas Jefferson University, Philadelphia. He has authored over 100 peer-reviewed articles on the subjects of genetic skin disease and squamous cell carcinoma.
Dr. Joanna Jackow
Assistant Professor at the St John’s Institute of Dermatology at King’s College London, UK. Her research is focused on fundamental understanding of inherited human skin diseases such as Epidermolysis Bullosa and developing effective therapeutic strategies using innovative gene editing technologies and molecular drugs. Dr. Jackόw spent the past several years working in two of the most accomplished dermatology research- laboratories across Europe.
Professor Jemima Mellerio
Prof. Mellerio’s clinical expertise is a genetic skin disease, notably EB, other genetic skin diseases and paediatric dermatology. Her research activities focus on novel translational therapies for genodermatoses such as cellular and gene therapy approaches for EB and other genetic skin diseases.
St John's Institute of Dermatology, Guy's & St. Thomas' NHS Foundation Trust, United Kingdom
St John's Institute of Dermatology, Guy's & St. Thomas' NHS Foundation Trust, United Kingdom
Professor Cristina Has
Professor at the Department of Dermatology of the University of Freiburg in Germany with a focus of interest on EB and other genetic skin disorders. Her clinical activity includes general and pediatric dermatology, with focus and genodermatoses. With her group, she has identified new genes and characterized large cohorts of patients with genodermatoses, established genotype-phenotype correlations and explored the underlying disease mechanisms.
Associate Prof. Anna Bruckner
University of Colorado, United States
Dr. Anna Martinez
Dr. Martinez is a major contributor to research in the field of paediatric dermatology, in particular EB. She is Chief Investigator and Principal Investigator on a rolling programme of clinical trials into novel therapies in paediatric dermatology.
Dr. Su Mar Lwin
Dr. Lwin’s research focuses on translational therapeutics; she is currently leading a DEBRA-funded project to develop spray-on gene therapy for RDEB. She further expands her interests in unraveling complex mechanisms underlying EB and wider clinical applications of advanced therapeutics.
Professor Peter Marinkovich
Prof. Marinkovich’s basic science and clinical research teams are currently engaged in several ongoing gene therapy trials for epidermolysis bullosa.
Professor Eli Sprecher
Prof. Sprecher’s research focuses on the genetic basis of skin diseases. His group aims to understand the molecular genetics of both simple and complex traits, decipher their pathogenesis, and then attempt to translate this new knowledge into innovative therapeutic tools.
Professor Dedee Murell
Prof. Murell’s current research focuses on developing and validating clinical outcome measures for EB and the Autoimmune blistering diseases, which have enabled clinical trials to proceed in these orphan diseases.
Professor Amy Paller
Amy Paller, MS, MD is the Walter J. Hamlin Professor and Chair of Dermatology, Professor of Pediatrics, and Principal Investigator of the NIH-funded Skin Biology and Diseases Resource-based Center (SBDRC) at Northwestern. She directs the Pediatric Dermatology Clinical Trials Unit at Northwestern/ Lurie Children’s Hospital, which has participated in more than a dozen trials and investigations related to epidermolysis bullosa and is a member of the Epidermolysis Bullosa Clinical Research Consortium. Her laboratory focuses on skin innervation in inflammatory diseases, wound healing, and topically delivered gene regulation through nanotherapy.
Ph.D. Gregory Zinoviev
Clinical expertise is a diagnosis and combined treatment of soft tissue, bone sarcomas (resections, reconstructive and plastic surgery, endoprosthetics) and inorganic retroperitoneal tumours, as well as diagnosis and surgical treatment of malignant skin tumours. He is actively working with adult EB patients who have been diagnosed with cancer. He is a head of the Surgical Department of bone, soft tissue and skin tumours, oncologist at NMRC of Oncology named after N.N. Petrov of MoH of Russia, St. Petersburg and DEBRA Russia expert.
Prof. Dr. Dr. Martin Steinhoff
Chairman, Dept. of Dermatology, Director of the Dermatology Institute and Director of the Translational Research Institute at Hamad Medical Corporation, Qatar. He is Professor at Weill-Cornell Medicine-New York, USA, Weill-Cornell Medicine-Qatar, and Qatar-University, and holds board certificates in Dermatology, Venereology, Phlebology and Allergy. His fields of interest are Atopic Dermatitis, Pruritus, Psoriasis, Rosacea, and Wound care. His research has been funded with >60 Mio Euro, published >230 peer-reviewed articles (IF>1,200; H-index 78), holds numerous patents, and was PI on various clinical trials. Prof Steinhoff received prestigious international research awards, was on board-of-directors of European Society of Dermatology Research, and is honorary member of several Societies for Dermatology.
Dr. Alexander Pleshkov
Dr. Pleshkov has been contributing to the work with EB patients for many years, performing finger splitting surgery. He is a leading surgeon in the Department of Burns and Plastic Surgery at NMRC of the Nikiforov’s NRCERM, and a DEBRA Russia expert. He is a member of the DEBRA International team that develops guidelines for hand surgery.
Margarita Geht
Dermatologist, paediatrist, leading dermatologist at DEBRA Russia. Dr. Gecht's clinical expertise lies in the children's intensive care and care in the first month of life, genetic diseases (EB, ichthyosis, keratoderma and other genodermatoses) and pediatric dermatology. Research work aims to develop a specialized scale for assessing pain and other subjective sensations in patients with EB. Management of pregnancy, postpartum period in women with different types of EB predominantly with RDEB (Dystrophic bullous epidermolysis, autosomal recessive type).
Dr. Antonia Reimer
German board-certified Dermatologist, Paediatrician, and Allergist. Since 2016, she has been working at the EB-Center and the Department of Dermatology – Medical Center, University of Freiburg, Germany. As a clinician-scientist, her research focus lies on the natural history of EB with special interests in growth, nutrition, and the microbiome. Her research work is funded by debra international and the German Foundation for Paediatric Dermatology. She was selected to join the ESDR Future Leaders Academy in 2019 and represented Germany in the 2021 Euroderm Excellence Academy.
MD. Kenneth Goldschneider
Director of the Pain Management Center at Cincinnati Children’s Hospital in Cincinnati Ohio, USA. He is board-certified in Anesthesiology, Pediatric Anesthesia and Pain Management and has lectured and published extensively on pain in children and young adults. He is a member of the EB Center in Cincinnati and has cared for patients with EB for many years. He led the development of the pain and itch best care practice guidelines in 2012 and continues to do research on the best care for patients with EB.
Ph.D. Tariq Khan
Consultant Podiatrist and Director of the Marigold Clinic, Royal London Hospital for Integrated Medicine, University College London Hospitals. Dr Khan is also the Lead for Podiatry for Debra UK, and co-authored the Clinical practice guideline on EB Podiatry (2019). His current areas of research include warts and verruca pedis, neurovascular corns, fibrous corns, keratoderma, heel pain, plantar fasciitis, hallux valgus (bunion), epidermolysis bullosa, and wound healing.
Dr. Isin Sinem Bagci
Finished medical training in Turkey, completed Dermatology training in Turkey and Germany. Worked on autoimmune blistering diseases and noninvasive imaging techniques mainly focusing on innovative diagnostic methods for blistering diseases. Currently a Postdoc fellow working in Marinkovich lab at Stanford University, Department of Dermatology with a focus on gene replacement treatments in epidermolysis bullosa and characterization of subsequent autoimmune reactions.
Dr. Anja Diem
Dr. Diem is closely involved in clinical research, coordinates multidisciplinary collaboration at local, national and international levels, and is author or co-author of numerous scientific and educational publications, including a patient-oriented, multilingual “EB handbook”.
Dr. May El Hachem
Head of the Dermatology Unit, Bambino Gesù Children’s Hospital, IRCCS, Rome, Italy. Also she is Coordinator of the Reference Centers for Rare Skin Diseases and for Rare Vascular Anomalies at the hospital. She is President of the Italian Society for the Study of Vascular Anomalies and President of the Scientific Committee of the Rare Skin Diseases Network (Fondation René Touraine). Her research interests are natural disease history, genotype-phenotype correlation and novel therapeutic approaches in rare genetic skin diseases. She has more than 135 mostly on genodermatoses, in particular epidermolysis bullosa.
Ph.D. Alexander Nyström
A group leader at the Department of Dermatology, Medical Faculty, Medical Center –
University of Freiburg, Germany. He received his PhD from Lund University, Sweden
and his postdoctoral training from Thomas Jefferson University, Philadelphia, PA,
US. His translational research focuses on the dermal microenvironment with a
special interest in collagen VII and therapy development for dystrophic epidermolysis
bullosa. In addition, he has served as an advisor to multiple companies and
foundations in the rare disease space to promote bed-to-bedside translation further.
University of Freiburg, Germany. He received his PhD from Lund University, Sweden
and his postdoctoral training from Thomas Jefferson University, Philadelphia, PA,
US. His translational research focuses on the dermal microenvironment with a
special interest in collagen VII and therapy development for dystrophic epidermolysis
bullosa. In addition, he has served as an advisor to multiple companies and
foundations in the rare disease space to promote bed-to-bedside translation further.
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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:
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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).
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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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