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Activating awareness of EB and other rare disorders in Africa and MENA regions: a DEBRA Congress
Congress Speakers
International Speakers
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Alexandra Heumber Perry
Rare Diseases International
Alexandra is the Chief Executive Officer of Rare Diseases International, the global alliance of Persons Living with a Rare Disease. As CEO of RDI, Alex drives organisational strategy, rare disease raising awareness, access to diagnostics, treatments and care, and advocacy for the rights of patients around the world. In her presentation, Alex highlights how patient organizations in the MENA region can work towards and in partnership with RDI for improving healthcare policies for Persons Living with a Rare Diseases.
Anica Ježić
Government of Croatia
Biography coming soon.
Dimitra Kiritsi
Aristotle University of Thessaloniki
Professor and Consultant dermatologist & Group leader, Department of Dermatology, Medical Center – University of Freiburg. M.D., PhD in Experimental Dermatology, University of Freiburg. Consultant and head of the Immunofluorescence laboratory and the "Clinical Trial Center-Fragile Skin", Department of Dermatology, Medical Center - University of Freiburg, since 2015. Professor of Dermatology, Aristotle University of Thessaloniki, Greece, since 04/2023. Fellow of the European Boarrd of Dermatology and Venerology. Associate Editor for Frontiers in Genetics and Frontiers in Pediatrics. Has more than 110 publication in high impact factor journals.
Ignacia Fuentes
DEBRA Chile
Ignacia is based in Santiago, Chile and joined DEBRA International in September 2018. Ignacia studied biochemistry in Chile, did her PhD in genetics in Germany, and returned to Chile to work in EB in 2013. Ignacia loves travelling. Thus, she has been a visiting scientist to learn about EB in many EB centres worldwide, such as the EB-Haus Austria, Thomas Jefferson University USA, and others. Ignacia is currently the Research Director of DEBRA Chile and leads a great team of people working for EB patients in different aspects of the disease, such as understanding the genetics and physiology of EB, participating in clinical trials on EB, and providing molecular diagnosis to EB patients in Chile. She is also an Assistant Professor at the Pontificia Universidad Católica de Chile. Although Ignacia has no personal connection to EB, she is committed to support with her knowledge and experience on EB research, DEBRA Chile, and EB patients worldwide.
Khadija Sellami
University of Sfax
Khadija is associate professor at the Dermatology venereology Department, Hedi Chaker University Hospital of Sfax, University of Sfax (south-east of Tunisia) Deputy secretary general of the Tunisian association of Pediatric dermatology. Qualifications in Pediatric dermatology, Sexology, Wound healing, Simulation in healthcare and Cosmetic dermatology. She Has special interest in pediatric dermatology and genodermatoses especially Epidermolysis bullousa and ichthyoses. She Has actively contributed to the creation of the EB regional committee in Sfax, which gathers different specialists involved upon EB patient needs in order to offer a multidisciplinary care.
Nabeelah Peerbhai
University of Cape Town
Nabeelah is currently a genetic counselling intern at the University of Cape Town in South Africa where She’s also involved in variant interpretation for the Neuromuscular Disease Africa Initiative and where she completed her MMedSci degree in Genetic Counselling. Her research explored the perceived experiences of Sickle Cell Disease Patients in the Emergency Centre’s of South African hospitals. Prior to this, she completed my honours in Human Genetics at the University of Witwatersrand and an undergraduate degree in Biochemistry and Psychology from the University of Johannesburg. In addition to her academic roles and qualifications, she is the director of the Sickle Cell South Africa Non Profit Company and actively involved in patient advocacy with Rare Diseases South Africa.
Priscila Matsumoto Martin
DEBRA Brasil/Albert Einstein Hospital
Priscila Keiko Matsumoto Martin is a researcher with a background in Medical Biological Sciences from the Federal University of São Paulo (2008). She completed her master's (2011) and doctoral (2016) degrees in Biological Sciences (Molecular Biology) at the same institution. Currently, she works at the Research Institute of Albert Einstein Hospital, focusing on gene therapy projects using base editing for recessive dystrophic epidermolysis bullosa and sickle cell anemia. Additionally, she serves as the Director of Research at Debra Brazil. Priscila has extensive experience in biochemistry, molecular and cellular biology, and genetics, with a particular emphasis on gene and cell therapy for monogenic diseases.
Andreas Miller
DEBRA Germany
Meet Andreas Miller, born with junctional epidermolysis bullosa. His early years were marked by harrowing experiences due to the lack of adequate EB care in Germany. These challenges later ignited a conviction for concrete and possible change and his motivation to actively advocate for the rights of EB patients. Andreas, who studied sociology, promotes hope and fosters collaboration with fellow patients, researchers, and industry. For several years now, Andreas has served as Vice Chairman of DEBRA Germany, tirelessly advocating for improved resources and support for EB patients. His motivation stems from his conviction for tangible change and his faith in DEBRA Germany's capacity to effect positive transformation. He cherishes direct exchanges with patients, believing in support, empowerment and empathy through shared experiences. Andreas firmly believes that everyone with EB has the right to lead a good life.
Carol Hlela
Red Cross Children's Hopsital
Prof Hlela is a dermatologist, former Dermatology Head of Department at Red Cross Memorial Children’s Hospital, and a researcher currently doing her fellowship in the United States since 2019. She grew up in KwaMashu Township, just outside Durban in KwaZulu Natal.
Emeline Baillargeault
URGO Medical
Emeline has worked in the wound care and healing sector since 2012, she obtained a university degree in wounds and healing in 2019 and then decided to specialize in professional relations, medical training and awareness of chronic wounds, diabetes and to epidermolysis bullosa. She is also an active member of the Urgo Foundation, managing projects in around fifteen countries to support and train healthcare professionals to help them better heal their patients. Passionate and committed to EB patients and their families, in 2023 she promotes the partnership with Debra International and becomes the ambassador of Urgo Medical in all their joint projects.
Ira Jain
DEBRA Singapore / Youth Council
Ira is a management consultant in Financial Services Advisory who lives with EB Simplex in Singapore. She has been a member of DEBRA Singapore since its inception in 2015. As a current executive committee member, her responsibilities include grant management, event organisation, and publicity & communications. Ira is also a founding member & Vice President of the Debra International Youth Council, committed to helping meet the often unseen needs of youths with EB. She graduated from University College London with a degree in Chemistry in 2021, and is passionate about scientific research, sustainability, and making a difference. On weekends, you can find her reading a good book or watching a game of ice hockey. Go Leafs!
Andrew South
Thomas Jefferson University
Professor Andrew South is a genetics graduate from the University of Leeds, who obtained his PhD from the University of London in 1999 whilst working on the human genome project with Dean Nizetic. Following this from 1999‐2002 he was a postdoctoral research fellow at St John’s Institute of Dermatology, St Thomas’ Hospital in London with John McGrath. He then worked as a research associate with Ian Hart and subsequently as a lecturer in Irene Leigh’s department at Bart’s and the London from 2002 to 2007. He then moved his lab to the University of Dundee, based at Ninewells Hospital in the Division of Cancer Research, where he was until he moved to the United States in 2014. His laboratory interests centre on determining and dissecting basic mechanisms implicated in the underlying pathogenesis of cutaneous squamous cell carcinoma in patients with recessive dystrophic epidermolysis bullosa.
Dedee Murrell
University of New South Wales
Professor Dedee Murrell completed medical training at Cambridge and Oxford Universities, 3 years of internal medicine in the UK and USA, dermatology training at UNC-Chapel Hill, a fellowships in dermatopharmacology at Duke University, blistering diseases and cell biology at New York University, and then became a clinical scholar in psoriasis and epidermolysis bullosa at Rockefeller University with Prof James Krueger, completing a doctorate on the pathogenesis of blistering disorders. She developed the Australian EB diagnostic lab, MDTs for EB in Sydney, EB registry and pioneered the National EB Dressing scheme with DebRA Australia. She has developed and validated outcome measures for EB (QOLEB and EBDASI) pemphigus, pemphigoid and EB and designs and conducts clinical trials of new therapies for blistering diseases and inflammatory dermatoses. She has edited 6 books on blistering diseases, including the textbook, Blistering Diseases. She was President of the ASDR 2019-21 and Co-Chair of the EB research conference in Osaka, Japan in 2023. She has delivered invited lectures in 50 countries, including many in the Middle East.
Faiza Ambreen
DEBRA Pakistan
Faiza is a Global Health expert with over two years of experience in evidence generation and health policy analysis. She holds and MSc in Global Health Policy form the London School of Economics. Currently, she is serving as a Research Consultant at the Global Surgery Policy Unit within the Department of Health Policy at LSE. She conducted a pioneering research by using consensus-building approach for prioritizing unmet needs for people living with rare diseases in Pakistan and developed a conceptual policy framework to inform national strategy. As a parent of child with EB, she passionately advocates for people with rare diseases. As a director of DEBRA Pakistan, she has spearheaded various EB awareness campaigns in collaboration with DEBRA International. Through her work, she aims to enhance access to pharmacological products for rare diseases in LMICs, ensuring that geographic and socioeconomic barriers do not hinder access to life-saving treatments.
Kalsoom Begum
University Hospitals Birmingham
Biography coming soon.
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Megan Foster Flaherty
DEBRA International
Megan is based in the UK and has recently joined DEBRA International in December 2023 as the Operations and Communications Coordinator, helping Liv with the managing the day-to-day operations of the organisation, and managing the communications such as the newsletter, social media and campaigns. She has previously worked in another small rare disease charity after graduating from university with a degree in journalism. She has worked across the charity sector in different roles including event and social media management, as well as admin. Despite having no personal link to EB, Megan is very passionate about supporting small charities who help families with rare diseases and who provide support, research, advocacy and education about rare diseases after losing her youngest sister to a life limiting condition.
Olivia Mullins
DEBRA International
Liv is Executive Director for DEBRA International based in the UK having joined the organisation in 2016. In her role, she is responsible for overseeing the strategic and operational efficiencies of the organisation’s programmes and staff. She has previously worked in project and account management, and the education sectors within the UK and Spain. Liv studied Spanish and Italian at university with a focus on translation. Despite having no personal link to EB, Liv was driven to join DEBRA having seen how support, like DEBRA's, has helped her father cope with a severe and debilitating skin condition. A self-professed travel enthusiast, she's always looking for the next adventure.
Rahul Mahajan
PGIMER
Rahul currently works as Additional Professor in the Department of Dermatology, Venereology and Leprology, Postgraduate Institute of Medical Education and Research (PGIMER), Chandigarh, India. He has published more than 150 research papers in indexed journals, and in recent years, his work includes clinical and translational research on epidermolysis bullosa and congenital ichthyosis, pediatric atopic eczema, pediatric psoriasis, pediatric alopecia areata, and infantile hemangioma. He is the Lead investigator in 10 research projects. He has utilized these projects to set up diagnostic next-generation sequencing facilities for EB and congenital ichthyosis at his institute in India, and initiated pilot clinical trials on investigational drugs in these disorders. For his work in the field of Dermatology, he was awarded the Fellowship to Royal College of Physicians, Edinburgh in 2022, and the membership to the Indian “National Academy of Medical Sciences” in the year 2016. He is the Deputy Editor of the Indian Dermatology Online Journal.
Mehar Singh
DEBRA International
My name is Mehar, I am 17 years old, and I have RDEB. Talking a bit about myself, from a young age, I've immersed myself in the world of drones, driven by an insatiable curiosity for technology and innovation. Despite the physical limitations, my determination to explore the skies has only grown stronger. Beyond my love for drones, I am deeply passionate about spreading awareness about EB and advocating for patients like myself. I initiated the DEBRA International Youth Council, a platform dedicated to raising awareness about EB and advocating for improved treatments and support for those affected by the condition. Through my advocacy work, I strive to shed light on the challenges faced by individuals living with rare diseases and to foster a community of support and understanding.
Pertunia Mutheiwana
H3ABioNet
Pertunia is a Training Curriculum Administrator at the Computational Biology Division in the Health Sciences Faculty at the University of Cape Town (UCT). She offers training and curriculum coordination, facilitation, and administration support for H3ABioNet, a Pan African Bioinformatics Network for the Human Heredity and Health in Africa (H3Africa) consortium. Pertunia coordinated the 2022 and 2023 African Genomic Medicine Training Initiative (AGMT) course, an H3ABioNet-funded course that aimed to develop relevant competencies in genomic medicine and provide basic genomics and genetics education to healthcare professionals in Africa. Additionally, Pertunia is a qualified award-winning teacher with a Master's degree in Education and has been accepted to study for a PhD at UCT under the Accelerated Transformation of the Academic Programme (ATAP). Furthermore, Pertunia is interested in education and training, particularly in curriculum development, educational technology and educational psychology.
Ritu Jain
DEBRA International
Ritu is President of DEBRA International, and the board member of various rare disease organisations including APARDO, RDI, IRDiRC, and GlobalSkin. Ritu is wife and mum to brave EB warriors based in Singapore. She joined DEBRA International in 2016, a year after founding DEBRA Singapore. Her firm commitment to making a difference to under-served EB patients in South and South-East Asia drives her service as an EB Without Borders Ambassador. Ritu also serves on Professor of sociolinguist at the Nanyang Technological University where she teaches graduate and undergraduate courses. She is equally passionate about her research on the impact of Language Policies on immigrant minorities in multilingual sites and publishes on the topic. In her 'spare time', Ritu loves to run and still dreams of completing a full marathon one day!
Ryan Hultman
DEBRA Canada
Ryan is currently the Vice President of DEBRA Canada and has served on the board for 12 years. He has a 13-year-old with RDEB. He lives in Vancouver, Canada and when not working as the owner of a residential design company and EB caregiver, works diligently to make sure each daughter has the same experience and opportunities, including the great outdoors. The recent highlight was taking his child with RDEB on a 5-day remote wilderness canoe circuit with portages. For the 11th straight year, he runs a DEBRA Canada fundraiser at the top of Grouse Mountain called Bella’s Ball. A broomball event (like hockey, no skates and on ice) where able bodied people must run about the ice to get a fun and often painful view of what it is like to live with EB. Like the game, the reality of EB for Ryan and family is to be an active participant and not sit back and watch the game. The event seeks out EB sufferers from across Canada to attend as a belle or beau of the ball. Providing a weekend away and avenue to build an ever-stronger national EB community.
Shirlene Badger
Illumina
Shirlene Badger is Patient Advocacy lead for EMEA at Illumina, Inc. In this role, she leads the Patient Advocacy strategy and engagement across the fields of rare and undiagnosed genetic disease, reproductive health and oncology. Trained as a medical sociologist, she spent over fifteen years leading academic research initiatives at the University of Cambridge and elsewhere that sought to elevate the impact of patient voice in the development and implementation of novel and experimental medical technologies.
Toni Roberts
DEBRA South Africa
A dedicated advocate for rare disease patients, Toni co-founded DEBRA South Africa after years of connecting and supporting individuals affected by Epidermolysis Bullosa (EB) around the country. Armed with her degrees in Psychology and 10-year experience as a qualified Life Line lay counsellor, she provides practical assistance and emotional support to patients near and far. Recently appointed as the President of the newly established DEBRA International Youth Council, Toni continues her mission to uplift and upskill the next generation of leaders. With being half Swiss, her efforts extend beyond borders as she travels both locally and internationally, championing for EB awareness, advocating for improved guidelines, and amplifying the voices of patients. With unwavering commitment and compassion, Toni strives to make a tangible difference in the lives of those impacted by EB, embodying the spirit of empathy and empowerment.
Safaa Saker-Delye
Généthon
Safaa PharmD – DEA Université Paris Sud- Faculty of Pharmacy. From 1999 Manager of Genethon's DNA and Cell Bank, Founding member of the French network of Biobank, Member of the commission to devise the implementing decree of Bioethics laws of 2004 concerning the centers.
Sophie Kitzmüller
EB Haus
Working for and with EB patients since 13 years in different roles, Dr Sophie Kitzmüller established a deep understanding of the needs and strengths of patients, families and HCPs, patient advocacy and industry relations. She started her career as a research associate in the lab of the expertise center EB house Austria. 3 years of intense research led to the offering of a PhD candidate position at the University of Salzburg, where she earned her PhD title 3.5 years later. With newfound interest in clinical research, she transitioned back to the EB house Austria as clinical trial coordinator. Experience and dedication lead to the transition to clinical trial management and in 2019 to becoming head of the EB academy and EB Clinet, an international network for HCPs working with EB patients.
Vlasta Zmazek
DEBRA Croatia
My son Matija, 1983-2018, was my inspiration and force for battle to achieve better quality of life for persons with EB and their families. I was founder of DEBRA Croatia in 1996, collaborating and learning from DEBRA UK. As DEBRA Croatia, we have organised numbers of Seminars and Congresses for the entire region. For Croatian families we have achieved all items for care, free of charge as well as treatments needed. As EBWB regional ambassador, I supported development of DEBRAs in the region: Serbia, Bosnia, Slovenia, and Poland. As President of Rare Diseases Croatia in parallel I was member of the Board of Directors at EURORDIS for 10 years. I am one of the founders of DEBRA International and representative on the GlobalSkin. Last year,I was invited to the UN as an example of holistic patient-centred care organised through our Rare Resource Centre.
Shaden Abdel Hadi
Khalifa University
Consultant of Pediatric Dermatology, European Board and Arab Board Certified in Dermatology & Venereology, Belgian Board Certified in Pediatric Dermatology (including clinical training at Seattle Children’s Hospital, Seattle, USA). She holds the Belgian Board in Human Medical Genetics from the Belgian Society of Human Genetics BeSHG (including training at Guys & St. Thomas Genetic Skin Diseases Center in London, UK). Moreover, she is a Fellow of the Royal College of Physicians of Edinburgh (FRCP Edin). Additionally, she is a Fellow of the American Academy of Dermatology (FAAD), the European Academy of Dermatology and Venereology (FEADV) and the European Society of Pediatric Dermatology (FESPD). Dr. Shaden is a Member of the Editorial Board of the Dermatologic Therapy, a John Wiley & Sons Ltd. journal. She is also the Director of the ACGMEi accredited Dermatology Residency Program at Sheikh Khalifa Medical City, Abu Dhabi. Dr. Shaden holds the distinction of being the first fully licensed Pediatric Dermatologist in Abu Dhabi. She has been highly active in academics since 2012 including active teaching and supervision in her specialties in both Belgium and the UAE. Dr. Shaden Abdelhadi is an Assistant Professor of Dermatology at College of Medicine and Health Sciences, Khalifa University in Abu Dhabi. In 2021, she was appointed as a founding committee member and section chair, National Institute of Health Sciences (NIHS) for the Emirati Board of Dermatology. Moreover, she is the founder and head of the Multidisciplinary Epidermolysis Bullosa Center at SKMC.
Sophie Strobl
Sigmund Freud University Vienna
Sophie is a dedicated researcher and lecturer at the Department of Psychology, Sigmund Freud University Vienna, Austria. Specializing in health psychology and psychological testing, Sophie's work focuses on improving the quality of life in chronic and rare diseases through interdisciplinary approaches bridging medicine and psychology. Currently pursuing her Ph.D. at the University of Freiburg, Sophie's research centers on "quality of life in Epidermolysis bullosa." She has been part of the research project "Epidermolysis bullosa: Burdens and helpful factors for quality of life," led by Dr. Gudrun Salamon for four years and is part of the BUR-EB Study group. Sophie's commitment to advancing knowledge in her field is reflected in her latest publication in the British Journal of Dermatology, where she investigated the psychometric properties of the Instrument for Scoring Clinical Outcomes of Research for Epidermolysis Bullosa patient score (iscorEB-p), a patient-reported outcome measure.
Zlatko Kopecki
DEBRA Australia / UniSA
Zlatko is a Senior Research Fellow based at University of South Australia in Adelaide, South Australia. His doctoral studies centered on developing novel therapies for patients with skin blistering diseases and he has been working in the field since 2007. His latest work is focussed on combating wound infection in blistered wounds. Zlatko has been a DEBRA Australia director since 2013 and joined DEBRA International in 2016. He is passionate about the EB Without Borders programme and has led the development of DEBRA Cuba. Additionally, Zlatko's clinical studies led to development of the in-home nursing program for EB sufferers in Australia. As Treasurer of DEBRA International he hopes to work with the Executive Committee in developing long-term sustainability and support for national DEBRAs around the world.
Zlatko Orucevic
DEBRA Norway
Zlatko has been a part of the DEBRA Norway family since his younger sister was born with recessive dystrophic epidermolysis bullosa (RDEB) when he was three years old. He is the deputy leader of DEBRA Norway and has been a board member since 2018, his membership in the organization stretching back to 1993, reflecting a longstanding dedication to advocacy work. Outside of his advocacy work, Zlatko holds a master's degree with a specialization in industrial economics and technology management, and he works as a project manager in a consulting firm. Beyond his career, he enjoys skiing and swimming, symbolizing his love for an active lifestyle. Driven by a desire to raise awareness about EB and support the work of DEBRA Norway, Zlatko is dedicated to making a difference for "butterfly children." His contributions reflect a combination of personal passion and professional skill, aimed at contributing to a better future for those affected by EB.
Egyptian Speakers
Adel Botros Zaghloul
Consultant dermatology and Venereology, Cairo Skin VD hospital ( Al Haud Al Marsoud) from 1981 - 2022. Consultant Sexually Transmitted Infections at WHO (EMRO and Genéve 2005- 2013). Life member American Academy of Dermatology 1987- present.
Emadeldin Abdelmoneim Elgamal
Professor Emeritus of Dermatology,Venereology and Andrology Damietta Faculty of Medicine, Al-Azhar University Membership of National Societies: Egyptian Society of Dermatology, Venereology and Andrology: Past board member. Alexandria Society of Dermatology, Venereology and Andrology: Board member and Secretary General. Egyptian Society for Psoriasis, established and registered officially 2016:President. Membership of International Societies: American Academy of Dermatology AAD European Academy of Dermatology and Venereology EADV Skin Inflammation and Psoriasis International Network SPIN:Representative of Egypt and member of Scientific Committee. Former Egyptian coordinator of the “Genodermatoses and Mediterranean “ project. Supervisor and mentor of many MD and Master theses. Reviewer of National and International Journals. Publications on: Hair diseases and surgery, psoriasis, psoriatic arthritis, cryosurgery, lichen planus, leprosy, acne, urticaria, melasma, scars, male and female sexual dysfunction.
Hoda Yousry
Associate Professor of Medical Genetics, Director of Molecular Biology Unit, Quality Manager Center of Excellence in Molecular and Cellular Medicine, Faculty of Medicine - Suez Canal University. Holder of a degree in medical education and bioinformatics. Alumnus of the international Leadership and Management Program (UNILEAD 2021) - Oldenburg University, Germany and of Interdisciplinary Research Excellence Program. She has a special interest in technology-based entrepreneurship where she founded her startup “Med Predict”. Dr Hoda was the PI and Co-PI of multiple international and national funded projects for cancer, dermatological diseases, autoimmune diseases, COVID19, research infrastructure development. Organizer of several international and national events in her field and mentor of more than 40 MSc and PhD students. Her main research interest is related to cancer and autoimmune diseases.
Khaled Helmi El-Wakeel
Studies: MBBCh, Faculty of Medicine, Ain-Shams University M.Sc, Medical Genetics, Ain-Shams University Ph.D. in Medical Genetics, Alexandria University Post graduate two years Diploma in Statistics, Institute of Statistical Studies, Cairo University Positions: Assistant professor, Biological Anthropology Department, Medical Research Division, National Research Centre Experience: Beside my main specialty in Anthropology-Genetics, I have experience in Information theory, we developed a function (infoFunction) which measure amount of information in a system of different hypothesis such as a list of differential diagnosis. It resembles Shannon’s Entropy function with some differences. Statistical analysis, as well as developing modules for statistical analysis. Development of Software systems including oTr@cer, a software for measurements (Applied in Orthodontics, Endodontic, Genetics, anthropometry, etc) oNeuroNet, an artificial intelligence engine (neural network) oZageL, a communication software (SMS & email gateway) oOther database including medical database
Mohamed Abdel-Kader
BDS Oral and dental medicine ,MDS of Dental Prosthodontics , Cairo University & DDS. Dental Prosthodontics Al Azhar University Associate Prof, Orodental Genetics Department, Oral & Dental Research Division, National Research Center. CAIRO, EYGPT. Founder of ECTODERMAL ORAL REHABILITATION CLINIC , Orodental Genetics Department, National Research Center. CAIRO, EYGPT. Principal investigator of National research centre internal project entitled “A new strategy for Prosthodontic Rehabilitation of patients suffering from Ectodermal dysplasia syndrome” Associate Prof, Removable Prosthodontics Dept., Misr International University (MIU) – Egypt., & AL Ahram Canadian University (ACU) – Egypt. Consultant of Prosthodontics and Dental Implantology at Ftama Dental Clinic & Dental district dental care center (Dr. Ihab Ibrahim) Cairo Eygypt. AFSHG (African Society of Human Genetics) young investigator prize: 1st prize for poster presentation. November, 2007.
Reham William Naguib Doss
Assistant professor of Dermatology, Faculty of Medicine, Beni-Suef University-Egypt. M.B.B.CH. Faculty of Medicine, Cairo University, Beni-Suef branch. M Sc Dermatology and Venereology from Cairo University, Egypt. Diploma in Medical Laser Applications, National Institute of Laser Enhanced Sciences, Cairo University. MD Dermatology, Cairo University, Egypt. Member of the Royal Colleges of physicians (MRCP) in UK 2016. Academic Appointments: Served as resident at the Dermatology department, Beni-Suef University Hospitals, and Cairo University Hospitals 2004 - 2007. Assistant Lecturer (2007-2011), Lecturer (2011-2018) of Dermatology, Faculty of Medicine, Beni-Suef University.
Adel Hussein Amr
Professor of plastic and reconstructive surgery sub-specializing in hand surgery. He graduated from Ain Shams University in Cairo, Egypt, in 1998 and has since been working there, ascending from residency to assume his current position as professor. After completing basic training in plastic surgery, he specialized in reconstructive hand surgery, obtaining his masters and doctorate degrees in microneural surgery. He is a fellow of UNESP university in São Paulo, Brazil. Dr Adel is also a consultant of hand surgery in several governmental and private hospitals in Egypt, where his work mainly focuses on trauma patients and congenital hand deformities. He has been operating on EB patients’ hands for almost a decade, creating a multidisciplinary team for management of this condition.
Hagar El Sayed
MSc, MD. Lecturer of dermatology, Kasr Alainy School of Medicine, Cairo University. Spent her residency and post-doctoral training in Kasr Alainy school of medicine following up patients suffering epidermolysis bullosa, different genodermatoses, bullous diseases, psoriasis among others. Mentored by Professor Mohammad El Darouti, she was following up hundreds of epidermolysis bullosa patients. She contributed to studies and research reports on EB, psoriasis, vitiligo, laser and energy-based devices. She’s a member of the psoriasis and LASER units in Kasr Alainy School of Medicine. Dr. Hagar is responsible for the assessment of residents’ training in the psoriasis and LASER units as well as a member of the residents’ training team. She is currently conducting several research grants, mentoring dermatology fellows in different topics of dermatology and is the organizer of the weekly scientific meeting of the dermatology clinic planned by Prof. ElDarouti. She contributed her research to several national dermatology conferences and workshops.
Ghada El-Kamah
MBBCh, MSc, PhD. Professor Clinical Genetics, founder of The Hereditary Blood Disorders (HBD) and Genodermatoses clinics and research team, Human Genetics and Genome Research Institute (HGGRI), National Research Centre (NRC). Focus rare disorders, dysmorphology, community genetics, science management and genetic education. Executive Committee member of; National Strategic Programs for Biotechnology and Genetic Engineering, the African Society of Human Genetics, Arab Association for Genetic Research, the Egyptian Committee for Pathology Training (ECPT)-Genetics, editorial board of the Journal of Genetic Engineering and Biotechnology, associate editor Journal of Human Genomics, ethical coordinator HGGRI and NRC-IRB, head of HGGRI scientific and cultural relations committee. Representing Egypt at Global Globin Network, Human Variome Project. Guest lecturer at YARSI University, Indonesia and expert member of the Genodermatoses Network Scientific Committee (2000-2018). PI and participant in 30 national and international research grants concerned with clinical, diagnostics, educational, and ethical aspects of human genetics.
Khaled R Gaber
Professor of Prenatal Diagnosis, founder and former Head of the first integrated prenatal diagnosis and fetal medicine department in NRC and Egypt (2003-2021). In addition, he established Outpatient clinics, for Maternal-Fetal care and recurrent pregnancy loss.The researches performed in the department include clinical, ultrasonographic and cytogenetic, biochemical and molecular studies. This achievement was in collaboration with Professor Mona K Farag and Professor Sanaa Helmy. Prof. Gaber had his basic education at the Peres Jesuites School and graduated from Faculty of Medicine Cairo University (1981). He obtained his MSc Degree from Cairo University in Obstetrics and Gynecology and his Ph.D. Degree in Human Genetics from Alexandria University. He got his experience in the field of prenatal diagnosis during his stay in Germany (Ulm University). He has over 60 peer-reviewed publications in national and international journals, mentored more than 50 M.Sc. and Ph.D. students in his field. In addition to his contribution in over 25 projects either as a principle or participant investigator.
Mohammad Ali El Darouti
Prof. of Dermatology & Dermatopathology Kasr Alainy School of Medicine, Cairo University (1991 till present). Instructor of Dermatopathology in Lybia, Oman and Kuwait, examiner at Dermatopathology board in Kuwait and Teaching Clinical Cases in Bahrain. Developed stem cell therapy for Epidermolysis Bullosa, described Muckle Wells syndrome, Familial gigantic Melanocytosis and the new distinctive skin lesion of Necrolytic Acral Erythema in Hepatitis-C patients. He established: the first dermatopathology unit and the first unit for treatment of critical skin disorders in the Middle East, the first dermatology unit and the first unit for management of life threatening skin diseases in Egypt. He founded Dermatopathology as a subspeciality in Medical Doctorate of Dermatology, Kasr Alainy. Authored six books in dermatology and dermatopathology. Mentored several fellows, residents and medical students and holds a weekly teaching clinical round in Kasralainy outpatient dermatology clinic. Awarded Omar bin Abdul Aziz Al- Sheikh Prize for scientific research and community service 2014, Honored several times by the faculty of medicine and by Egyptian Medical Syndicate 2023.
Rasha El Barbary
Professor of dermatology and venereology at Al-Azhar University. With years of experience in this field, she is known for her expertise in diagnosing and treating various skin diseases and sexually transmitted diseases. Dr. Al-Barbari is committed to educating the next generation of dermatologists through her teaching and research activities. She also actively participates in community outreach programs to raise awareness about skin health and disease prevention. Dr. El-Barbari is one of the founders of the Egyptian Society of Dermatopathology and a member of the Egyptian society of Psoriasis and the Egyptian Society of Dermatology and Venereology. She is a former associate editor at jweds magazine. She has conducted many researches into the genetic factors related to skin diseases. She is know the vice dean of education and student affairs in the Faculty of Nursing Al-Azhar University
Ahmed Mohsen Sadek
PhD, MSc, DBA, MB, BCh - Dermato-Venereology & Laser Consultant Manager of Cairo Hospital for Dermatology & Venereology (Al-Haud Al-Marsoud), Cairo, Egypt . Owner & Manager of Dr. Sadek Clinics. Vice Manager of Cairo Health Affairs Directorate for the Egyptian Fellowship Affairs. Cairo Health Affairs Directorate Clinical Research Coordinator . Trainer at The Egyptian Dermatology Fellowship Program , Secretary General of the Egyptian Society of Dermatology & Venereology. Secretary General of the European Society of LASER & Energy Based Devices. Executive Board Member of the International Dermoscopy Society (IDS), Chair of Imaging in Medical Aesthetics Task Force. IMCAS Scientific Board Member. Course Director of Egyptian Ministry of Health & Population Clinical Dermatology Mega Training Program. International Fellow of the American Academy of Dermatology. International Fellow of the European Academy of Dermatology & Venereology. Deputy Editor of the Egyptian Journal of Dermatology & Venereology. Dermato-Oncology Section Editor of Dermatology Practical & Conceptual Journal.
Hanaa El Sadat
Mother of Yasmin El Samra, who was born with RDEB (1997-2012), wife to a professor of ophthalmology, and mum to 3 gentlemen free of EB and a grandmother of a boy and a girl free of EB. She has been the founder of Yasmin EL Samra Charity Foundation since 2014. Chairperson of the foundation after being officially established in 2018. The foundation became one of Debra International groups in 2021. She is a member of the Board of Committee at Debra International from 2022 until 2024. The Yasmin ElSamra Foundation, DEBRA egypt, is hosting the EB congress 2024 in EGYPT 4.
Khalda Sayed Amr
Professor and former head of Medical Molecular Genetics Department, Human Genetics and Genome Research Division of National Research Centre (NRC), Cairo, Egypt. She received her PhD in “Human Genetics” Cairo University (Egypt). Awarded; the Academy of Scientific Research and Technology award for encouragement of ongoing research, Misr El Kheer Charity for the highest indexed publication (Misr El Kheer charity), and the National Research Centre award for Scientific Advancement in Medical Sciences. Prof. Khalda was selected at Marquis Who’s Who World International Scientists in Medicine and Healthcare. She mentored 15 Master degrees and 27 PhD students, participated in more than 32 international, national projects as a principle investigator or consultant. She authored more than 64 publications on different genetic disorders in high indexed international Journals, cited 2061. h-index: 23 ORCID NO: 0000-0001-8472-5911 an genetics.
Maha Nasr
Professor and Researcher of Pharmaceutics and Industrial Pharmacy, and the Executive director of the academic cooperation and international relations sector at the Faculty of Pharmacy, Ain Shams University, Egypt (h index 40). She has published more than 140 international papers in the field of drug delivery and nanotechnology. Dr. Maha was awarded several international awards, among which is the African Kwame Nkrumah regional award in the field of Life Sciences 2019, and Khalifa award for Education in 2023 (Distinguished University Professor at the level of the Arab world in the field of Higher Education). She is currently a member of the Expert committee for reviewing monographs in the Egyptian Pharmacopoeia in the Egyptian Drug Authority EDA, a member of the Drug Research Council by a Ministerial decision, and a member of the National Drug committee.
Mohamad Nagy
Pharmacy Director and the founder of the Personalized Medication Management Unit at the Children’s Cancer Hospital 57357. He is a clinical instructor at Colorado university school of pharmacy. Mohamed is considered one of the Experts in clinical pharmacogenomics and Nutrigenomics in Middle East and Africa. He dedicated his genetic knowledge not only to patients but also to allow healthy individuals to find the best sports and nutrition routine tailored to their unique individual genetic makeup in order to achieve the best health outcomes. Mohamed is an instructor of Personalized Medicine and Nutrigenomics at Tanta University and Alexandria University. Mohamed is a founder in Pharmacogenomics Access & Reimbursement Coalition (PARC) and he is also a founder of the Standardizing Laboratory Practices in Pharmacogenomics (STRIPE). Currently, Mohamed is leading the Pharmacogenomics Research Network Developing Countries Committee for the area of Middle East and Africa. He is a member in the Clinical Pharmacogenetics Implementation Consortium (CPIC) and he participates in developing the international guidelines for clinical guidelines.
Sherif Kamal
The Advisor of the Chairman of EHA board for medication management and pharmacy affairs For more than 20 years, Sherif has led a team that implemented clinical pharmacy services at various hospitals throughout Egypt and the region . He is the recipient the Egyptian Hospital Pharmacist Association Award and founder of the Egyptian Association of Clinical Pharmacists in 2010 Sherif is leading an African initiative to improve healthcare via clinical pharmacy and medication management in Africa ,including Sudan,Ethiopia,Malawi , Uganda and Botswana.