Тоҷикӣ
Тоҷикӣ
ТАВСИФИ БАРНОМА
ТАВСИФИ БАРНОМА
Мутахассисони соҳаи тандурустӣ, муҳаққиқон, олимон аз тамоми ҷаҳон барои мубодилаи таҷриба, гирифтани маслиҳатҳои амалӣ ва муҳокимаи технологияҳои муосир ва тадқиқоти инноватсионӣ дар соҳаи ЗМ ҷамъ меоянд.

Барномаи ҳаррӯза:
ЗЕРКАШӢ БАРНОМАИ
Workshop: Family Forum with the Health Professionals
Workshop: Nutrition
Workshop: Update on Outcome Measures
Workshop: Update on Registries
РӮЗИ 1
16 сентябр (панҷшанбе)
Маросими ифтитоҳ
Тадқиқоти асосӣ ва пеш аз клиникӣ
Таърихи табиӣ
Семинарҳои идоракунии DEBRA
(танҳо гурӯҳҳои DEBRA)
Professor
Jemima Mellerio
Professor
Cristina Has
Associate Prof.
Anna Bruckner
Dr
Anna Martinez
Сардори шӯъба:
Prof. Jemima Mellerio
Гӯяндагони бахш:
Сардори шӯъба:
Prof. Johann Bauer, Prof. Peter Marinkovich
Гӯяндагони бахш:
* - тасдик карда шавад
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
РӮЗИ 2
17 сентябр
(ҷумъа)
Ҷаласаи роҳнамо (танҳо бо даъватнома)
Озмоишҳои клиникӣ 1
Таҷрибаи EB International ва дастгирии байналмилалӣ

Беморон ва ташкилотҳои беморон хуш омадед!
Озмоишҳои клиникӣ 2
Семинарҳо барои иштирокчиёни тиббӣ: форумҳои касбӣ (танҳо бо даъват)
Dr
Su Mar Lwin
Professor
Peter Marinkovich
Professor
Eli Sprecher
Сардори шӯъба:
Prof. Leena Bruckner-Tuderman, Prof. Helmut Hintner
Гӯяндагони бахш:
Professor
Dedee Murrell
Сардори шӯъба:
Prof. Eli Sprecher, Dr. Su Mar Lwin
Гӯяндагони бахш:
Professor
Amy Paller
Professor
Michele De Luca
Dr
Dimitra Kiritsi
РӮЗИ 3
18 сентябр
(шанбе)
Нигоҳубини клиникӣ ва идоракунӣ
Ҳадафи мушкилоти терапевтӣ
Семинарҳои идоракунии DEBRA
(танҳо гурӯҳҳои DEBRA)
Музокироти имкониятҳои иҷтимоӣ, таҳсилот ва кор
Сардори шӯъба:
Professor Dedee Murrell, Professor Martin Laimer
Сардори шӯъба:
Associate Prof. Anna Bruckner, Dr. Anja Diem
Ph.D.
Gregory Zinoviev
Dr
Alexander Pleshkov
Гӯяндагони бахш:
Dr
Tariq Khan
Гӯяндагони бахш:
MD.
Kenneth Goldschneider
Professor
Martin Steinhoff
* - тасдик карда шавад
Dr
Antonia Reimer
Professor
Nikolay Murashkin
Professor
Jemima Mellerio
Professor
Adrian Heagerty
РӮЗИ 4
19 сентябр (якшанбе)
Нигоҳубини бисёрсоҳавӣ
Keynote 3: нигоҳубини беморон бо ёрии компютер (TM, Imaging AI)
Имкониятҳои гуфтугӯҳои иҷтимоӣ, таълимӣ ва корӣ, гуфтугӯҳои оила
Шабакаи тиббӣ ба беморон ва саволу ҷавобҳо аз рӯи кишварҳо дар асоси минтақаи вақт
Маросими пӯшидашавӣ
Dr
Anja Diem
Сардори шӯъба:
Dr. Anna Martinez, Prof. Nikolay Murashkin
Гӯяндагони бахш:
Dr
Alexander Pleshkov
Dr
Margarita Geht
Dr
Anna Martinez
Dr
Jan-Sher Bhatti
Dr
Christine Bodemer
Кумитаи илмӣ
  • Professor
    Johann Bauer
    Head of SPC
    Paracelsus Medical University,
    Austria
  • Professor
    Martin Laimer
    Secretary of SPC
    Paracelsus Medical University,
    Austria
  • Professor
    Cristina Has
    University of Freiburg,
    Germany
  • Professor
    Helmut Hintner
    EB House Austria,
    Austria
  • Professor
    Peter Marinkovich
    Stanford University,
    United States
  • Professor
    Jemima Mellerio
    St John's Institute of Dermatology, Guy's & St. Thomas' NHS Foundation Trust,
    United Kingdom
  • Associate Professor
    Anna Bruckner
    University of Colorado,
    United States
  • MD, PhD
    Julia Kotalevskaya
    Moscow Regional Research and Clinical Institute (MONIKI),
    Russia
  • Professor
    Nikolay Murashkin
    National Medical Research Center for Children's Health,
    Russia
Кафедраҳо
  • Professor Johann Bauer
    Доктор Бауэр аз соли 2014 инҷониб дерматологи тахассусӣ, профессор ва раиси кафедраи дерматологияи беморхонаи Донишгоҳи Залтсбург мебошад. Дар ин ҷо ӯ директори EB House Austria, маркази миллии беморони буллосаи эпидермолиз дар Австрия мебошад. Вай таҷрибаи деринаи ташхиси молекулавӣ, менеҷмент ва тадқиқот оид ба биологияи пӯст / бемориҳои блистер, пиршавии пӯст ва нейробиологияи пӯстро дорад. Таваҷҷӯҳи асосии ӯ таҳияи терапевтҳои нав барои беморонест, ки аз бемории пӯсти эпидермолиз буллоса азият мекашанд.
  • Professor Peter Marinkovich
    Дотсенти кафедраи дерматология ва яке аз аъзои асосгузори барнома дар биологияи эпителиалӣ, мактаби тиббии Донишгоҳи Стэнфорд. Кори ӯ ба биологияи мембранаи таҳкурсӣ ва рушди тарҷумаи терапевти молекулавӣ барои буллосаи эпидермолиз равона шудааст. Вай аз соли 1995 то 2000 собиқ табиби табиб дар Феҳристи миллии ДМ буд ва директори клиникаи бемориҳои Буллоз дар Донишгоҳи Стэнфорд мебошад. Гурӯҳҳои илмии илмӣ ва илмии клиникии ӯ айни замон дар якчанд озмоишҳои генотерапия барои буллосаи эпидермолиз машғуланд.
  • Professor Jemima Mellerio
    Мутахассисии клиникии профессор Меллерио як бемории генетикии пӯст аст, алахусус ДМ, дигар бемориҳои генетикии пӯст ва дерматологияи кӯдакон. Фаъолиятҳои илмии ӯ ба терапияҳои тарҷумаи нав барои генодерматозҳо, ба монанди равишҳои терапевтҳои ҳуҷайравӣ ва генӣ барои ДМ ва дигар бемориҳои генетикии пӯст равона шудаанд.

    Институти дерматологияи Сент Ҷонс, Бунёди Бунёди NHS Guy's & St. Thomas 'Санкт-Томас, Шоҳигарии Муттаҳида
  • Professor Leena Bruckner-Tuderman
    Профессор ва кафедраи дерматология дар Маркази тиббӣ - Донишгоҳи Фрайбург. Тадқиқоти ӯ бо биологияи мембранаҳои таҳхона ва матритсаи ҳуҷайра, бо сабабҳои молекулавӣ ва механизмҳои бемориҳои ихтилоли носолимии генетикӣ ва бадастомада, инчунин таҳияи терапияҳои нав, аз ҷиҳати биологӣ асоснок бахшида шудааст. Таҷрибаи ӯ корҳои илмӣ ва клиникӣ дар Финляндия, ИМА, Швейтсария ва Олмон, инчунин иштирок дар ташкилотҳои миллӣ ва байналмилалиро дар бар мегирад. Вай президенти Ҷамъияти Аврупоии Тадқиқоти Дерматологӣ, Ҷамъияти Дерматологии Олмон ва ноиби президенти Бунёди Тадқиқоти Олмон буд.
  • Professor Helmut Hintner
    Пас аз таҳсили тиббии худ дар Инсбрук (Австрия) ва истиқомати 1,5-сола дар Донишкадаи Миллии Тандурустӣ дар Бетезда (ИМА), Ҳелмут Хинтнер аз соли 1992 то ба нафақа баромаданаш мудири кафедраи дерматологияи Донишгоҳи тиббии Параселсус дар Залтсбург буд. дар 2014. Вай дар таъсиси EB House Austria дар Залтсбург ва ҳаммуассиси EB-CLINET ширкат варзидааст ва аз соли 2011 то 2014 узви Австрия дар Кумитаи коршиносони ИА оид ба бемориҳои нодир (EUCERD) буд, ки масъул буд барои рушди марказҳои экспертиза ва шабакаҳои истинодии аврупоӣ. Ҳелмут Хинтнер инчунин муаллифи китоби «Ҳаёт бо эпидермолиз Буллоза (ДМ): Этиология, Диагностика, Нигоҳубин ва Мултисозии Терапевтӣ мебошад (ба забонҳои англисӣ, испанӣ, чинӣ ва русӣ дастрас аст).
  • Professor Eli Sprecher
    Тадқиқоти профессор Спречер ба асосҳои генетикии бемориҳои пӯст равона шудааст. Гурӯҳи ӯ ҳадафи фаҳмидани генетикаи молекулавии ҳам аломатҳои оддӣ ва ҳам мураккаб, муайян кардани патогенези онҳоро дорад ва сипас кӯшиш мекунад, ки ин дониши навро ба абзорҳои инноватсионии терапевтӣ табдил диҳад.
  • Dr. Su Mar Lwin
    Тадқиқоти доктор Лвин ба терапевтҳои тарҷумонӣ равона шудааст; ӯ айни замон лоиҳаи аз ҷониби DEBRA маблағгузорӣ кардашуда оид ба рушди терапияи генҳои дорупошӣ барои RDEB роҳбарӣ мекунад. Вай минбаъд манфиатҳои худро дар кушодани механизмҳои мураккаби асоси ЗМ ва татбиқи васеи клиникии терапевти пешрафта васеъ менамояд.
  • Professor Dedee Murrell
    Таҳқиқоти ҳозираи профессор Мурелл ба таҳия ва тасдиқи тадбирҳои натиҷаҳои клиникӣ барои бемориҳои блистеризатсияи EB ва Autoimmune равона шудааст, ки имкон доданд озмоишҳои клиникӣ дар ин бемориҳои ятим идома ёбанд.
  • Professor Martin Laimer
    Профессори пӯст ва муовини мудири кафедраи пӯст ва аллергологияи беморхонаи Донишгоҳи Донишгоҳи тиббии Парацелс Залтсбург. Вай ба таври илова ба Маркази Омӯзиши Клиникии EB House Austria роҳбарӣ мекунад, ки маркази ташхиси миллӣ оид ба буллосаи эпидермолиз дар пӯсти ERN (Network Reference Network) мебошад. Доктор Лаймер қариб 20 сол ҳам бо клиникӣ ва ҳам дар соҳаи бемориҳои нодир бо таваҷҷӯҳи хос ба буллосаи эпидермолиз кор мекунад. Соли 2014 ӯ ҳамраиси Шӯрои директорони Маркази бемориҳои нодир дар Залтсбург таъин шуд ва минбаъд Академияи Австрия оид ба таълими дерматологиро аз соли 2018 роҳбарӣ мекунад. Соли 2020 котиби генералии Ҷамъияти Австрия Дерматология ва Венерология интихоб шуд.
  • Associate Professor Anna Bruckner
    University of Colorado, United States.
  • Dr. Anja Diem
    Доктор Дием дар таҳқиқоти клиникӣ зич алоқаманд аст, ҳамкории гуногунсоҳаро дар сатҳи маҳаллӣ, миллӣ ва байналмилалӣ ҳамоҳанг мекунад ва муаллиф ё ҳаммуаллифи нашрияҳои сершумори илмӣ ва таълимӣ, аз ҷумла ба беморон нигаронидашудаи «Дастурамали ЗМ» мебошад.
  • Dr. Anna Martinez
    Доктор Мартинес саҳми калон дар таҳқиқот дар соҳаи дерматологияи кӯдакон, алахусус ДМ мебошад. Вай сармуфаттиш ва муфаттиши асосӣ оид ба барномаи амалишавандаи озмоишҳои клиникӣ ба терапияҳои нав дар дерматологияи кӯдакон мебошад.
  • Professor Nikolay Murashkin
    National Medical Research Center for Children's Health, Russia.
ГУФТОРОН
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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