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計劃說明
來自世界各地的衛生專業人員，研究人員，科學家聚集在一起，分享經驗，獲取實用建議並討論EB領域的前沿技術和創新研究。

每日節目：
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Workshop: Family Forum with the Health Professionals
Workshop: Nutrition
Workshop: Update on Outcome Measures
Workshop: Update on Registries
第一天
9月16日（星期四）
开幕式
基础和临床前研究
自然历史
DEBRA 管理研讨会
（仅限 DEBRA 组）
Prof.
Jemima Mellerio
Prof.
Cristina Has
Associate Prof.
Anna Bruckner
Dr.
Anna Martinez
椅子：
Prof. Jemima Mellerio
部分演讲者：
椅子：
Prof. Johann Bauer, Prof. Peter Marinkovich
部分演讲者：
* - 被允许
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
第 2 天
9 月 17 日（星期五）
指导会议（仅限受邀者）
临床试验 1
EB 国际经验和国际支持

欢迎患者和患者组织！
临床试验 2
医疗参与者研讨会：专业论坛（仅限受邀者）
Dr.
Su Mar Lwin
Professor
Peter Marinkovich
Professor
Eli Sprecher
椅子：
Prof. Leena Bruckner-Tuderman, Prof. Helmut Hintner
部分演讲者：
Professor
Dedee Murrell
椅子：
Prof. Eli Sprecher, Dr. Su Mar Lwin
部分演讲者：
Professor
Amy Paller
Professor
Michele De Luca
Dr
Dimitra Kiritsi
第 3 天
9月18日（星期六）
临床护理和管理
针对治疗挑战
DEBRA 管理研讨会
（仅限 DEBRA 组）
社交、教育和工作机会机会讲座
椅子：
Prof. Dedee Murrell, Prof. Martin Laimer
椅子：
Associate Prof. Anna Bruckner, Dr. Anja Diem
Ph.D.
Gregory Zinoviev
Dr.
Alexander Pleshkov
部分演讲者：
Dr
Tariq Khan
部分演讲者：
MD.
Kenneth Goldschneider
Prof. Dr. Dr.
Martin Steinhoff
* - 被允许
Dr.
Antonia Reimer
Professor
Nikolay Murashkin
Professor
Jemima Mellerio
Professor
Adrian Heagerty
第 4 天
9月19日（星期日）
多学科护理
主题演讲 3：计算机辅助病人护理（TM、AI 成像）
社交、教育和工作机会机会讲座、家庭讲座
医生对患者网络和问答按国家/地区基于时区
闭幕仪式
Dr
Anja Diem
椅子：
Dr. Anna Martinez, Prof. Nikolay Murashkin
部分演讲者：
Dr
Alexander Pleshkov
Dr
Margarita Geht
Dr
Anna Martinez
Dr
Jan-Sher Bhatti
Dr
Christine Bodemer
科學委員會
  • 教授
    Johann Bauer
    科學委員會負責人
    奧地利Paracelsus醫科大學
  • 教授
    Martin Laimer
    科學委員會秘書
    奧地利Paracelsus醫科大學
  • 教授
    Cristina Has
    弗萊堡大學，
    德國
  • 教授
    Helmut Hintner
    EB House Austria，
    奧地利
  • 教授
    Peter Marinkovich
    斯坦福大學，
    美國
  • 教授
    Jemima Mellerio
    英國蓋伊和聖托馬斯健康基金會聖約翰皮膚病研究所
  • 助理教授
    Anna Bruckner
    科羅拉多大學
    美國
  • 博士
    Julia Kotalevskaya
    俄羅斯莫斯科區域研究臨床研究所（MONIKI）
  • 教授
    Nikolay Murashkin
    俄羅斯國家兒童健康醫學研究中心
椅子
  • Professor Johann Bauer
    Bauer 博士是一名获得委员会认证的皮肤科医生，自 2014 年以来一直担任萨尔茨堡大学医院皮肤科教授和主席。他是奥地利大疱性表皮松解症患者国家中心 EB House Austria 的主任。 他在皮肤生物学/水疱疾病、皮肤老化和皮肤神经生物学的分子诊断、管理和研究方面拥有长期经验。 他的主要兴趣是为患有大疱性皮肤病大疱性表皮松解症的患者开发新疗法。
  • Professor Peter Marinkovich
    皮肤病学副教授，斯坦福大学医学院上皮生物学项目的创始成员之一。 他的工作重点是基底膜的生物学和大疱性表皮松解症分子疗法的转化开发。 从 1995 年到 2000 年，他是国家 EB 登记处的前主治医生，并且是斯坦福大学大疱病诊所的主任。 他的基础科学和临床研究团队目前正在进行几项正在进行的大疱性表皮松解症基因治疗试验。
  • Professor Jemima Mellerio
    Mellerio 教授的临床专长是遗传性皮肤病，尤其是 EB、其他遗传性皮肤病和小儿皮肤病学。她的研究活动侧重于遗传性皮肤病的新型转化疗法，例如 EB 和其他遗传性皮肤病的细胞和基因治疗方法。

    圣约翰皮肤病研究所，盖伊和圣托马斯 NHS 基金会信托，英国
  • Professor Leena Bruckner-Tuderman
    弗莱堡大学医学中心皮肤病学教授兼主席。 她的研究涉及基底膜和细胞外基质的生物学、遗传性和获得性皮肤脆性障碍的分子原因和疾病机制，以及新的、生物学上有效的疗法的开发。 她的经验包括在芬兰、美国、瑞士和德国的研究和临床工作以及参与国家和国际组织。 她曾担任欧洲皮肤病学研究学会、德国皮肤病学会主席和德国研究基金会副主席。
  • Professor Helmut Hintner
    在因斯布鲁克（奥地利）接受医学教育并在贝塞斯达（美国）国立卫生研究院工作了 1.5 年之后，Helmut Hintner 从 1992 年起一直担任萨尔茨堡帕拉塞尔苏斯医科大学皮肤病学系主任直至退休 2014 年，他参与了萨尔茨堡 EB House Austria 的建立和 EB-CLINET 的联合创始人，并于 2011 年至 2014 年担任欧盟罕见病专家委员会 (EUCERD) 的奥地利成员，该委员会负责 用于发展专业知识中心和欧洲参考网络。 Helmut Hintner 还是“大疱性表皮松解症 (EB) 的生活：病因、诊断、多学科护理和治疗”一书的合著者（有英文、西班牙文、中文和俄文版本）。
  • Professor Eli Sprecher
    Sprecher 教授的研究重点是皮肤病的遗传基础。 他的团队旨在了解简单和复杂性状的分子遗传学，破译其发病机制，然后尝试将这些新知识转化为创新的治疗工具。
  • Dr. Su Mar Lwin
    Lwin 博士的研究重点是转化疗法； 她目前正在领导一个由 DEBRA 资助的项目，为 RDEB 开发喷洒基因疗法。 她进一步扩大了她对揭示 EB 背后复杂机制和先进疗法的更广泛临床应用的兴趣。
  • Professor Dedee Murrell
    Murrell 教授目前的研究重点是开发和验证 EB 和自身免疫性水疱疾病的临床结果测量，这使得临床试验能够在这些孤儿疾病中进行。
  • Professor Martin Laimer
    萨尔茨堡帕拉塞尔苏斯医科大学医院皮肤学教授，皮肤学和过敏学系副主任。此外，他还负责奥地利EB之家的临床研究中心，这是ERN（欧洲参考网络）皮肤内指定的国家表皮松解症专业中心。Laimer博士在罕见病领域从事临床和科学工作，特别是对表皮松解症感兴趣，已有近20年。2014年，他被任命为萨尔茨堡罕见病中心执行董事会的联合主席，并从2018年起进一步指导奥地利皮肤病教育学院的工作。2020年，他被选举为奥地利皮肤病学和性病学协会秘书长。
  • Associate Professor Anna Bruckner
    University of Colorado, United States.
  • Dr. Anja Diem
    马琰医生密切参与临床研究，协调地方、国家和国际层面的多学科合作，是许多科学和教育出版物的作者或共同作者，包括一本面向患者的多语种 "EB手册"。
  • Dr. Anna Martinez
    马丁内斯博士是儿童皮肤病学领域研究的主要贡献者，特别是EB。她是儿科皮肤病学新疗法临床试验滚动计划的首席调查员和主要调查员。
  • Professor Nikolay Murashkin
    National Medical Research Center for Children's Health, Russia.
音箱
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.
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 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.

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.
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.
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