O‘zbek
O‘zbek
DASTURI tavsifi
DASTURI tavsifi
Dunyo bo'ylab sog'liqni saqlash sohasi mutaxassislari, tadqiqotchilari, olimlari birlashib, tajriba almashadilar, amaliy maslahatlar oladilar va zamonaviy texnologiyalar va innovatsion tadqiqotlarni muhokama qilishadi.

Kundalik dastur:
DASTURNI YUKLAB OLISH
Workshop: Family Forum with the Health Professionals
Workshop: Nutrition
Workshop: Update on Outcome Measures
Workshop: Update on Registries
KUN 1
16 sentyabr (payshanba)
Ochilish marosimi
Asosiy va klinikadan oldingi tadqiqotlar
Tabiiy tarix
DEBRA menejment seminarlari (faqat DEBRA guruhlari uchun)
Professor
Jemima Mellerio
Professor
Cristina Has
Associate Prof.
Anna Bruckner
Dr
Anna Martinez
Bo'lim mudiri:
Prof. Jemima Mellerio
Bo'lim ma'ruzachilari:
Bo'lim mudiri:
Prof. Johann Bauer, Prof. Peter Marinkovich
Bo'lim ma'ruzachilari:
* - tasdiqlanishi kerak
Dr
Andrew South
Dr
Isin Sinem Bagci
Dr
Peter C. van den Akker
Dr
Joanna Jackow
Dr
Alexander Nyström
Professor
Dennis R. Roop
Professor
Jean Yuh Tang
KUN 2
17 sentyabr
(juma)
Yo'riqnoma sessiyasi (faqat taklifnoma bo'yicha)
Klinik sinovlar 1
EB International tajribasi va Xalqaro ko'mak

Bemorlarga va bemor tashkilotlarga xush kelibsiz!
Klinik sinovlar 2
Tibbiy ishtirokchilar uchun seminarlar: professional forumlar (faqat taklifnoma bo'yicha)
Dr
Su Mar Lwin
Professor
Peter Marinkovich
Professor
Eli Sprecher
Bo'lim mudiri:
Prof. Leena Bruckner-Tuderman, Prof. Helmut Hintner
Bo'lim ma'ruzachilari:
Professor
Dedee Murrell
Bo'lim mudiri:
Prof. Eli Sprecher, Dr. Su Mar Lwin
Bo'lim ma'ruzachilari:
Professor
Amy Paller
Professor
Michele De Luca
Dr
Dimitra Kiritsi
KUN 3
18 sentyabr (shanba)
Klinik yordam va boshqarish
Terapevtik muammolarni maqsad qilish
DEBRA menejment seminarlari (faqat DEBRA guruhlari uchun)
Ijtimoiylashish, ta'lim va ish imkoniyatlari muzokaralari
Bo'lim mudiri:
Prof. Dedee Murrell, Prof. Martin Laimer
Bo'lim mudiri:
Associate Prof. Anna Bruckner, Dr. Anja Diem
Ph.D.
Gregory Zinoviev
Dr
Alexander Pleshkov
Bo'lim ma'ruzachilari:
Dr
Tariq Khan
Bo'lim ma'ruzachilari:
MD.
Kenneth Goldschneider
Professor
Martin Steinhoff
* - tasdiqlanishi kerak
Dr
Antonia Reimer
Professor
Nikolay Murashkin
Professor
Jemima Mellerio
Professor
Adrian Heagerty
KUN 4
19 September (Sunday)
Ko'p tarmoqli yordam
Keynote 3: kompyuter yordamida bemorlarni parvarish qilish (TM, AI tasvirlash)
Ijtimoiylashish, ta'lim va ish imkoniyatlari, oilaviy suhbatlar
Bemorlarga tibbiyot tarmog'i va mintaqalar bo'yicha mamlakatlar bo'yicha savol-javoblar
Yopish marosimi
Dr.
Anja Diem
Bo'lim mudiri:
Dr. Anna Martinez, Prof. Nikolay Murashkin
Bo'lim ma'ruzachilari:
Dr.
Alexander Pleshkov
Margarita Geht
Dr.
Anna Martinez
Dr
Jan-Sher Bhatti
Dr
Christine Bodemer
Ilmiy qo'mita
  • Professor
    Johann Bauer
    Ilmiy qo'mita rahbari
    Paracelsus tibbiyot universiteti, Avstriya
  • Professor
    Martin Laimer
    Ilmiy qo'mita kotibi
    Paracelsus tibbiyot universiteti, Avstriya
  • Professor
    Cristina Has
    Frayburg universiteti,
    Germaniya
  • Professor
    Helmut Hintner
    EB House Avstriya,
    Avstriya
  • Professor
    Peter Marinkovich
    Stenford universiteti,
    AQSH
  • Professor
    Jemima Mellerio
    Seynt Jon Dermatologiya Instituti, Guy va Sent-Tomas sog'liqni saqlash fondi, Buyuk Britaniya
  • Dotsent
    Anna Bruckner
    Kolorado universiteti,
    AQSH
  • Ph.D.
    Julia Kotalevskaya
    Moskva mintaqaviy ilmiy-tadqiqot klinik instituti (MONIKI), Rossiya
  • Professor
    Nikolay Murashkin
    Bolalar sog'lig'i bo'yicha Milliy tibbiyot ilmiy-tadqiqot markazi, Rossiya
Kafedralar
  • Professor Johann Bauer
    Doktor Bauer 2014 yildan beri Zalsburg universiteti shifoxonasi dermatologiya kafedrasi tomonidan tasdiqlangan dermatolog, professor va kafedrada ishlaydi. Bu erda u EB House Austria direktori, bu Avstriyadagi epidermoliz bulbuloz kasallari milliy markazi. U molekulyar diagnostika, boshqarish va terining biologiyasi / qabariq kasalliklari, terining qarishi va terining neyrobiologiyasi bo'yicha tadqiqotlar bo'yicha uzoq yillik tajribaga ega. Uning asosiy qiziqishi pufak terisi epidermoliz bulosos kasalligi bilan og'rigan bemorlar uchun yangi davolash usullarini ishlab chiqishdan iborat.
  • Professor Peter Marinkovich
    Dermatologiya kafedrasi dotsenti va Stenford universiteti tibbiyot fakulteti epiteliya biologiyasi dasturining asoschilaridan biri. Uning ishi poydevor membranasi biologiyasiga va epidermoliz bulosa uchun molekulyar terapevtikani tarjima qilishga qaratilgan. U 1995 yildan 2000 yilgacha Milliy EB registrida sobiq davolovchi shifokor bo'lib, Stenford Universitetining Bullous Klinikasi direktori. Uning asosiy ilmiy va klinik tadqiqot guruhlari hozirda epidermoliz bulosa uchun gen terapiyasining bir necha doimiy sinovlari bilan shug'ullanmoqdalar.
  • Professor Jemima Mellerio
    Prof. Mellerioning klinik tajribasi genetik teri kasalligi, xususan, EB, terining boshqa genetik kasalliklari va bolalar dermatologiyasi. Uning ilmiy faoliyati genodermatozlar uchun yangi tarjima terapiyasiga, masalan, EB va boshqa genetik teri kasalliklariga uyali va gen terapiyasining yondashuvlariga qaratilgan.

    Seynt Jonning Dermatologiya Instituti, Guy's & St. Thomas 'NHS Foundation Trust, Buyuk Britaniya
  • Professor Leena Bruckner-Tuderman
    Frayburg universiteti tibbiyot markazining professori va dermatologiya kafedrasi. Uning tadqiqotlari poydevor membranalari biologiyasi va hujayradan tashqari matritsa, molekulyar sabablar va genetik va orttirilgan terining mo'rtlashishi kasalliklari mexanizmlari hamda yangi, biologik jihatdan to'g'ri davolash usullarini ishlab chiqish bilan bog'liq. Uning tajribasi Finlyandiya, AQSh, Shveytsariya va Germaniyadagi tadqiqot va klinik ishlarni, shuningdek milliy va xalqaro tashkilotlarda ishlashni o'z ichiga oladi. U Evropa Dermatologik tadqiqotlar jamiyati prezidenti, Germaniya Dermatologik jamiyati va Germaniya tadqiqot fondi vitse-prezidenti bo'lgan.
  • Professor Helmut Hintner
    Innsbruk (Avstriya) da tibbiy ma'lumot olganidan va Bethesda (AQSh) da joylashgan Milliy Sog'liqni Saqlash Institutida 1,5 yillik istiqomatidan so'ng Helmut Xintner 1992 yildan nafaqaga chiqqunga qadar Zalsburgdagi Paracelsus Tibbiy Universitetining Dermatologiya kafedrasi mudiri bo'lib ishlagan. 2014 yilda. U Zalsburgda EB House Austria-ni tashkil etishda qatnashgan va EB-CLINET asoschilaridan biri bo'lib, 2011-2014 yillarda u Evropa Ittifoqining Nodir kasalliklar bo'yicha ekspertlar qo'mitasi (EUCERD) a'zosi bo'lgan. Ekspertiza markazlari va Evropa ma'lumot tarmoqlarini rivojlantirish uchun. Helmut Xintner, shuningdek, "Epidermolysis Bullosa (EB): etiologiya, diagnostika, multidisipliner parvarish va terapiya bilan hayot" (ingliz, ispan, xitoy va rus tillarida mavjud) kitobining hammuallifi.
  • Professor Eli Sprecher
    Prof. Sprecherning tadqiqotlari teri kasalliklarining genetik asoslariga bag'ishlangan. Uning guruhi sodda va murakkab xususiyatlarning molekulyar genetikasini tushunishga, ularning patogenezini ochishga va keyinchalik ushbu yangi bilimlarni innovatsion terapevtik vositalarga aylantirishga harakat qilmoqda.
  • Dr. Su Mar Lwin
    Doktor Lvinning tadqiqotlari tarjima terapevtikasiga qaratilgan; u hozirda DEBRA tomonidan moliyalashtirilgan RDEB uchun purkagichli gen terapiyasini ishlab chiqish bo'yicha loyihani boshqaradi. U EB asosidagi murakkab mexanizmlarni ochish va ilg'or terapevtikaning keng klinik qo'llanmalariga bo'lgan qiziqishini yanada kengaytiradi.
  • Professor Dedee Murrell
    Prof. Murrellning hozirgi tadqiqotlari ushbu etim kasalliklarida klinik sinovlarni davom ettirishga imkon beradigan EB va Autoimmun pufakchali kasalliklar uchun klinik natijalarni ishlab chiqish va tasdiqlashga qaratilgan.
  • Professor Martin Laimer
    Paratselsus tibbiyot universiteti Zaltsburg universiteti kasalxonasi dermatologiya professori va dermatologiya va allergiya kafedrasi mudiri o'rinbosari. Shuningdek, u EB House Austria-ning ERN (European Reference Network) terisidagi epidermoliz bulbulosasi bo'yicha belgilangan milliy tajriba markazining Klinik tadqiqotlar markazini boshqaradi. Doktor Laymer deyarli 20 yil davomida Epidermolysis bullosa-ga alohida qiziqish bilan kamdan-kam uchraydigan kasalliklar sohasida ham klinik, ham ilmiy jihatdan ishlaydi. 2014 yilda u Zalsburgning Noyob kasalliklar markazi Ijroiya kengashi hamraisi etib tayinlandi va keyinchalik 2018 yildan boshlab Avstriya Dermatologik ta'lim akademiyasini boshqaradi. 2020 yilda u Avstriya Dermatologiya va Venerologiya Jamiyatining Bosh kotibi etib saylandi.
  • Associate Professor Anna Bruckner
    University of Colorado, United States.
  • Dr. Anja Diem
    Doktor Diem klinik tadqiqotlar bilan yaqindan shug'ullanadi, mahalliy, milliy va xalqaro darajadagi ko'p tarmoqli hamkorlikni muvofiqlashtiradi va ko'plab ilmiy va o'quv nashrlarning muallifi yoki hammuallifi, shu jumladan bemorga yo'naltirilgan, ko'p tilli "EB qo'llanma".
  • Dr. Anna Martinez
    Doktor Martinez bolalar dermatologiyasi, xususan, EB sohasidagi tadqiqotlarga katta hissa qo'shadi. U pediatrik dermatologiyada yangi davolash usullariga klinik tadqiqotlar dasturining bosh tergovchisi va asosiy tergovchisi.
  • Professor Nikolay Murashkin
    National Medical Research Center for Children's Health, Russia.
GAPIRuvchilar
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.
Professor
Dennis R. Roop
Dennis R. Roop, PhD, is the founding Director of the Charles C. Gates Center for Regenerative Medicine. He is Professor of Dermatology and holds the Charles C. Gates Chair of Regenerative Medicine. He was also founding Director of the Gates Biomanufacturing Facility, a state-of-the-art current Good Manufacturing Practices (cGMP) facility, which opened in April, 2015 and manufactures US Food and Drug Administration (FDA) approved investigational regenerative medicine products for early phase clinical trials. He has authored more than 300 peer-reviewed articles and his research program has been continuously funded by the National Institute of Arthritis and Musculoskeletal and Skin Diseases for over 30 years. He and his collaborators are developing an iPS cell-based therapy for RDEB.
Professor Jouni Uitto
Professor Uitto is Professor and Chair of the Department of Dermatology and Cutaneous Biology and Director of the Jefferson Institute of Molecular Medicine at Thomas Jefferson University in Philadelphia. He has several decades of interest in epidermolysis bullosa, and his research group was the first to clone several EB-associated candidate genes and to identify mutations in different subtypes of EB. His group also developed animal models for different forms of EB; these models have served as a platform for therapy development currently in the late preclinical and early clinical pipeline. Professor Uitto is the Chair of the Medical and Scientific Advisory Panel of DEBRA of America.
Dr Peter van den Akker
Clinical Geneticist and Research Fellow at the University Medical Center Groningen, the Netherlands. In addition, he is a DEBRA-UK sponsored Clinical Research Fellow at the University of Dundee, Scotland. In his clinical work, he focuses on Genodermatoses in general and EB in particular. His research centers around the genetics of EB with a special interest in RNA-based treatment approaches.
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
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.
Dr Anna Bruckner
Professor of Dermatology and Pediatrics at the University of Colorado School of Medicine and Section Head of Pediatric Dermatology at Children’s Hospital Colorado. Dr Bruckner specialises in pediatric dermatology, observational clinical research and clinical trials. Her areas of expertise include EB and other genetic skin disorders, vascular birthmarks, atopic dermatitis (eczema), and complex patients. She co-directs the Epidermolysis Bullosa Clinic at Children’s Hospital Colorado. She is a founding member of the EB Clinical Research Consortium, a network of North American EB care centres collaborating in clinical research to improve care and outcomes for patients with EB.
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 Murrell
Prof. Murrell’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.
Dr Christina Guttmann-Gruber
A group leader at the EB House Austria, an EU Centre of Expertise for epidermolysis bullosa and special clinic for EB patients at the University Hospital Salzburg. Her research focuses on understanding the processes of wound chronification and tumour development in EB, particularly the microbiome's contribution in these contexts. She further emphasises developing new strategies to improve wound healing and translating research from bench to bedside.
Professor Christine Bodemer
She is the Head of the Department of Dermatology at Necker Enfants-Malades Hospital in Paris and a professor of Dermatology at the Paris Descartes-Sorbonne University. She specialises in Pediatric Dermatology. One of her main areas of interest is rare skin diseases in children. She also coordinates a national expert centre (MAGEC), the French national network (FIMARAD) and the European network (ERN-SKIN) on rare diseases of the skin. Professor Bodemer has developed research and clinical networks in Dermatology and research programmes supported by national and international grants, leading to translational innovative therapies and patents. She is a member of many scientific societies and associate editor of various newspapers. She received in 2020 ILDS (the International League of Dermatology Societies) Award: 2020 ILDS Certificate of Appreciation for International Leadership
Dr Dimitra Kiritsi
Dr Dimitra Kiritsi‘s clinical and research focus has been on skin fragility disorders, genetic or acquired. Besides her work with patients, as a consultant dermatologist, she is leading the Clinical Trial Center Fragile Skin of the University of Freiburg. Her research interests encompass the identification of pathogenetic mechanisms for the different EB subtypes, especially the driving mechanisms of impaired wound healing, dysregulation of the immune system and development of skin tumours, as well as the exploration of new therapeutic approaches.
Dr Marieke Bolling
She is a Dermatologist at the Department of Dermatology, University Medical Center Groningen - the Center for Blistering Diseases in the Netherlands and the national expertise centre for Epidermolysis Bullosa (EB). She is a board member of the national society for Genodermatoses and ERN-Skin-Epidermolysis Bullosa. Her expertise includes clinical care and research on a wide range of topics involving EB.
BSc Martin Geroldinger
He is a Research Associate in Biostatistics and Data Science at the Paracelsus Medical University of Salzburg, Department of Research and Innovation Management, Team Biostatistics and Big Medical Data, IDA Lab Salzburg, with a research interest in rare diseases and statistical challenges with small sample sizes, as well as implementations and coding in R.

MSc Georg Zimmermann
He has been working as a research associate for statistics at the University Clinic of Neurology, Christian Doppler Medical Centre, SCI-TReCS, Paracelsus Medical University, Salzburg. Recently, he has been appointed team leader of the Team Biostatistics and Big Medical Data, Intelligent Data Analytics Lab Salzburg. His main statistical and methodological interests are systematic reviews, statistical methods for small samples, and sample size calculation. Moreover, Georg Zimmermann focuses on interdisciplinary research, with publications covering theoretical statistical work and study in neurology, paediatrics, and internal medicine.
Dr Jan-Sher Bhatti
He is a Clinical Psychologist with experience in providing evidence-based psychological approaches for children, young people and their families, who are living with paediatric conditions. He has worked alongside the Epidermolysis Bullosa (EB) Team at Great Ormond Street Hospital in London, and recognises how EB can affect the emotional wellbeing of families living with the condition, as well as the professionals who provide care. Jan-Sher's experience supporting the EB team has allowed him to consider the application of evidence based psychological models and approaches to assist with the varying demands of EB and to promote favourable development.
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