Partner Institutions

 

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Institut National de la santé et de la Recherche Médicale (INSERM) - FRANCE

The National Institute for health and medical research (INSERM) is the only French public research body entirely dedicated to human health. Its researchers are committed to studying all diseases, whether common or rare, through their research in the fields of biology, medicine and public health.

The department of Genetic skin diseases: molecular bases and therapeutic approaches is focus on genetic investigation and treatment of severe inherited skin disorders and mainly recessive dystrophic epidermolysis bullosa (RDEB).

 

Principal investigator: Alain Hovnanian and Matthias Titeux

 

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Assistance Publique Hopitaux de Paris (APHP)-FRANCE

The Necker Hospital is a university hospital, part of the Assistance Publique – Hôpitaux de Paris group, and is affiliated to the University of Paris Descartes. It offers a capacity of 400 beds for paediatrics and 200 beds for adults. 

 

For more than 20 years, the department of dermatology in the Necker Enfants Malades Hospital (Paris) has been organizing the coordination of an epidermolysis bullosa–specific multidisciplinary management. The French Ministry of Health distinguished this hospital as a reference center for rare diseases. MAGEC-Necker now aims to offer the best medical and social management of epidermolysis bullosa.

 

Principal investigator: Christine Bodemer 

 

 

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University of London (KCL) UK

King’s College London is one of England’s oldest and most prestigious university institutions and it is ranked as one of the world’s top 25 universities.

The Genetic Skin Disease Research Group, headed by Pr John McGrath, at St John’s Institute of Dermatology focuses on improving the understanding of the molecular and cellular basis of inherited skin diseases 

 

Principal investigator: John McGrath

 

 

 

 

Europäisches Institut zur Forschung und Entwicklung von Transplantationsstrategien GmbH (EUFETS) - Germany

Founded in 1997, EUFETS GmbH is a GMP service company with more than 10 years experience in cell and gene therapy. EUFETS has produced retroviral vectors for clinical trials performed in various European countries and has transduced patient- and donor cells for clinical trials on stem cell gene therapy and T cell gene therapy. EUFETS has been and is a partner in various EU granted networks from FP5 to 7.

As of May 2009, EUFETS GmbH operates as a subsidiary of BioNTech AG

 

Principal investigator: Klaus Kühlcke

   

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Genethon-France

Genethon is a charity-funded biotherapy organization, financed at 88.7% by the AFM, under the management of Dr Frédéric Revah, CEO. Genethon is a unique structure where researchers, technicians, chemists and physicians elaborate technologies to develop innovative therapeutics, like gene therapy or cell therapy, to treat rare or orphan diseases. Scientists of Genethon focus on therapeutic tools for in vivo or ex vivo gene transfer, on rare diseases and specifically on neuromuscular diseases as well as on immune system or skin diseases.

 

Principal investigator: Didier Caizergues

 

 

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Inserm transfert (IT)- France

Founded in 2001, Inserm-Transfert SA is the private subsidiary of the French Institute for Health and Medical Research (INSERM), dedicated to Technology Transfer and management of European and International collaborative research projects. The company possesses extensive expertise in two core areas: i) Intellectual Property management, Technology Transfer and exploitation of research results; ii) specific tools and gold standard methods for supporting scientists in their international project preparation and management.

 

Principal investigator: Dahlia Tsakiropoulos

 

 

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Debra-Austria

DEBRA International was founded in 1992 as an alliance of epidermolysis bullosa national patient support groups throughout Europe.  . DEBRA International is, for legal purposes, a project of DEBRA UK (UK Registered Charity NO 1084958) but is governed by an Executive Committee from seven different national groups. DEBRA International is the main repository of patient information about EB, i.e. the experience of living with the condition and patients' wishes and is the largest provider of EB research funds of all of the national DEBRAs around the world and manages a centralised research grant assessment process on behalf of all of the member groups of DEBRA International.

 

Principal investigator: John Dart and Clare Robinson

 

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Universidad Carlos III de Madrid

Founded in 1989, University Carlos III of Madrid (UC3M) is a public university characterized by its strong international focus, the quality of its faculty, excellence in research and commitment to society. UC3M is placed among the top universities in Spain and one of the top five Spanish universities selected in 2009 for the Spanish Campus of International Excellence program. In 2009 it was the fourth Spanish University participating in the EU FP. Recently, UC3M has reached the top of the Spanish universities in research activity and it is listed in the QS World University ranking among the top 400 universities in the world and the top 50 universities less than 50 years. UC3M is (has) involved in more than 70 actives FP7 projects as partner and coordinator. In 2010 UC3M took the strategic decision of creating a new degree in Bioengineering.  The UC3M Bioengineering Department is led by Prof. Marcela del Rio, previously head of the CIEMAT Regenerative Medicine unit and the CIBERER 714 unit (Institute of Health Carlos III). The UC3M group has built a major part of its activities in the frontier between basic and translational research in the regenerative medicine to improve dermatological conditions including rare skin disorders.  Its main objectives are the development of advanced bioengineered skin products, faithful skin disease model systems and rational therapeutic approaches. 

Principal investigators: Marcela Del Rio and Fernando Larcher

 

FUNDACIÓN PARA LA INVESTIGACIÓN BIOMÉDICA DEL HOSPITAL NIÑO JESÚS (FIBHNJ)

Hospital Universitario Niño Jesús is a public institution of Madrid Health Service (SERMAS), which provides specialized health services in the specialty of Pediatrics and Specific Areas to pediatric patients (0-18 years) of Madrid and all regions of Spain, in line with current regulations and legislation. Its commitments are providing quality pediatric care oriented health outcomes, specialized health training, and biomedical research with national and international recognition. The hospital gave birth to the pediatric specialty in Spain, since its founding in 1877, and became a pediatric reference health center nationwide.  It has the only GMP facility for cell and gene therapies for children in Spain, fully functioning from April 2010 after receiving the approval from the Spanish Ministry of Health.

Principal investigators: Manuel Ramirez and Gustavo Melen