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Genetic and Rare Diseases Information Center (GARD)

Epidermolysis bullosa

News & Events

ORDR Co-Sponsored Conferences

  • 2015 Epithelial Differentiation and Keratinization Gordon Research Conference & Gordon Research Seminar, Saturday, July 11, 2015 - Friday, July 17, 2015
    Location: Sunday River Resort, Bethel, Maine
    Description: Specific Aim:  Provide an outstanding scientific program reflecting the latest conceptual advances: Invited speakers include leading investigators in epithelial biology and early career scientists with innovative and exciting stories. The program covers areas of persistent interest such as stem cells, regeneration and aging, epithelial adhesion and polarity, epithelial cancers and rare diseases, and explores new topics including the epithelial-environmental interactions, novel regulatory mechanisms involving long noncoding RNAs and chromatin modifiers, exciting advances in live imaging, and genomics approaches to understanding development, carcinogenesis and evolution.

  • EB2015: DEBRA International Symposium on Epidermolysis Bullosa, Sunday, May 03, 2015 - Wednesday, May 06, 2015
    Location: Atlanta, GA
    Description: <p>Brett Kopelan, Executive Director of DEBRA of America, is proud to announce that the breadth of expertise and topics covered in the 'bench to bedside' programme has resulted in the National Institutes of Health (NIH) agreeing to provide funding for the conference. <br /> <br /> The conference will showcase the incredible strides over the last 3 years in the development of therapies and in the understanding of the disease in general. Speakers will focus not only on the basic science, but also on the translational work, new approaches to therapy, symptom relief, as well as clinical trial progress. </p> <p>While the conference is by invitation only, we are soliciting many up and coming researchers to present their work to the more seasoned EB community in hopes of having them continue the progress we have achieved. Mr. Kopelan will be giving an update in September at the DEBRA International congress in London. </p>

  • 2013 Epithelial Differentiation and Keratinization GRC/GRS, Saturday, May 11, 2013 - Sunday, May 12, 2013
    Location: Renaissance Tuscany Il Ciocco Resort, Lucca (Barga), Italy
    Description: Novel findings in rare disease gene identification, together with studies on disease mechanisms in human patients and in mouse models, will suggest novel therapeutic approaches and form the basis for new prenatal tests. Investigators including Drs. Tolar and Oro will report on the results of bone marrow stem cell therapies and small molecule therapeutics in human patients with rare skin diseases; successful outcomes of these clinical trials will spur expansion of the use of these approaches in patients. Gene correction in patient derived iPS is an exciting potential therapeutic approach to both recessive and dominant genetic skin diseases. Drs. Roop and Christiano will provide updates on derivation and characterization of iPS from patients, and will discuss approaches to gene correction and differentiation of iPS into skin cell lineages for potential use in grafting procedures

  • Gene Transfer and Rare Diseases Workshop, Thursday, September 13, 2012
    Location: Rockville Hilton, Rockville, Maryland
    Description: The NIH Office of Biotechnology Activities and Office of Rare Disease Research, NCATS, are co-sponsoring a workshop to discuss the advances in and challenges of gene transfer for rare diseases. There have been recent promising clinical successes in gene transfer protocols for rare diseases, such as retinal degeneration, hemophilia, and immune disorders. Investigators will discuss their results to date and opportunities and challenges for extending these successes to other similar rare diseases. The panel discussions will focus on strategies for maximizing opportunities for data sharing or platform development.

  • IPCC 2009 Symposium: Planning for Effective Delivery of Nucleic Acids to Skin, Tuesday, May 05, 2009 - Wednesday, May 06, 2009
    Location: Montreal, Canada
    Description: Conference organizers hoped that the 2009 IPCC scientific meeting would result in an effective plan for more patient-friendly and effective delivery to skin. The results of the symposium will be immediately applied to clinical trials and studies with patients.

Other Names for this Disease
  • EB
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