Lotus Tissue Repair Announces Support of First International Patient Registry for Epidermolysis Bullosa (EB) and Formation of Clinical Advisory Board
EBCare.org Registry Launched in Collaboration with DEBRA Patient Organizations on Rare Disease Day; Company Participates in Massachusetts State House Event
CAMBRIDGE, Mass. – February 29, 2012 – Lotus Tissue Repair, Inc., a biotechnology company developing the first and only protein replacement therapy for the treatment of the rare genetic disorder dystrophic epidermolysis bullosa (DEB), today announced that it is providing grants to support the development and maintenance of the first international EB patient-reported registry, EBCare.org. The registry was launched today by the DEB Research Association (DEBRA) International and DEBRA of America in conjunction with Rare Disease Day, as Lotus Tissue Repair participated in a Rare Disease Day event hosted by the Massachusetts Biotechnology Council at the Massachusetts State House.
“One of the biggest challenges we face when working to treat rare genetic diseases is the lack of robust patient information,” said Mark de Souza, Ph.D., president and chief executive officer of Lotus Tissue Repair. “By working closely with both DEBRA International and DEBRA of America to build and launch EBCare.org, we are taking an important step forward in the fight against EB and we are hopeful that this registry provides physicians and researchers with valuable patient-reported information on the prevalence, diagnosis, symptoms, medical care and the social and financial burden of illness associated with EB. We also are looking forward to working with our Clinical Advisory Board members, which include the leading experts in the research and treatment of DEB, to leverage the information gathered by the registry and accelerate the development of safe and effective EB treatments for patients.”
Lotus Tissue Repair, which is developing its proprietary recombinant collagen type VII (rC7) technology as a treatment for dermatologic conditions, including DEB, has provided grants to both DEBRA International and DEBRA of America to help defray costs associated with the development of the patient registry. Additionally, the company is a supporting sponsor of the DEBRA International’s Triennial Research Conference, EB2012, which will be held in Spain in November 2012 and DEBRA of America’s 2012 Patient Care Conference, which will be held in Orlando in July.
DEB is a devastating orphan disorder that causes skin blisters, morbidity and early mortality. There are currently no approved treatments for DEB, which results from mutations in the gene encoding collagen type VII.
“An international patient registry has been a long-standing goal of DEBRA and this is an important milestone for patients and their families,” said Rainer Riedl, president of DEBRA International. “We encourage patients and their families to participate fully as the registry will help us build the most comprehensive and valuable collection of data about the disease and could accelerate the development of new treatments for EB.”
“We are excited to work with Lotus Tissue Repair on this registry to gather much-needed, first-hand information about the diagnosis, symptoms, medical care and the social and financial burden of living with EB,” said Brett Kopelan, executive director of DEBRA of America. “Our goal is to use this first patient-reported repository of data to help better understand EB, enable improved advocacy efforts and, ultimately, have a greater impact on patients’ lives.”
Lotus also announced today the formation of its Clinical Advisory Board, which brings together renowned leaders in the DEB field. Members of the Clinical Advisory Board are driving cutting-edge research into potential new therapies and include leading specialists providing care for EB patients:
- Leena Bruckner-Tuderman, M.D., Ph.D., University Medical Center, Freiburg
- Barbara Gilchrest, M.D., Boston University School of Medicine
- Anne Lucky, M.D., Cincinnati Children’s Hospital Medical Center
- M. Peter Marinkovich, M.D., Stanford University School of Medicine
- John McGrath, M.D., Guy’s Hospital and King’s College, London
- Karen Wiss, M.D., University of Massachusetts Medical Center, Worcester
- David Woodley, M.D., University of Southern California
About Lotus Tissue Repair, Inc.
Lotus Tissue Repair, Inc. is developing its proprietary recombinant collagen type VII (rC7) technology as a treatment for dermatologic conditions in which rC7 may play an important role in accelerating wound healing. The company’s lead program is the first and only protein replacement therapy for the treatment of dystrophic epidermolysis bullosa (DEB), a devastating orphan disorder with no currently approved treatment options other than palliative care. Lotus Tissue Repair is a private company launched in 2011 by a proven team of biotechnology entrepreneurs, the world’s leading experts in rC7 therapy for chronic skin wounds and Third Rock Ventures. For more information, please visit www.lotustissuerepair.com.
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