Generalized dominant dystrophic epidermolysis bullosa
- Autosomal dominant dystrophic epidermolysis bullosa, Pasini and Cockayne-Touraine types
- DDEB, generalized
- DDEB, Pasini and Cockayne-Touraine types
- Dominant dystrophic epidermolysis bullosa, generalized
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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.
The Spectrum of Caregiving and Palliative Care in Rare Diseases, Tuesday, June 09, 2015
Location: Building 31, 6C, Room 6, Bethesda, MD
Description: The findings and recommendations resulting from the Workshop will provide guidance to the extramural community as well as to NINR and other Institutes, Offices (e.g., ORDR), and agencies in developing strategies for advancing the science of palliative care and caregiving in rare disease and research programs. It is anticipated that a funding opportunity announcement will result from the Workshop.
American Society of Gene & Cell Therapy (ASGCT) 18th Annual Meeting, Wednesday, May 13, 2015 - Saturday, May 16, 2015
Location: New Orleans, LA
Description: From our plenary lectures, this year to be given by Drs. Steven Rosenberg and Anthony Atala, to our 19 scientific symposia featuring invited speakers from across our discipline, to our nightly abstract poster receptions, where the majority of the over 700 abstracts submitted to the Annual Meeting are presented, the ASGCT Annual Meeting is certain to be the premiere scientific meeting in our field.
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
RDCRN 3rd Conference on Clinical Research for Rare Diseases, Tuesday, October 02, 2012
Location: Hilton Washington DC/Rockville Hotel & Executive Meeting Center, Rockville, MD
Description: Clinical research in rare diseases presents a number of challenges and unique issues that are not usually considered in the training of clinical investigators through existing training programs. Goals of the conference include: direct instruction of trainees and new investigators in rare disease research methodology; development of a reusable curriculum/syllabus on rare disease research methodology; and stimulation of ideas regarding the unique issues facing investigators engaged in the study of rare diseases.
VI International Conference on Rare Diseases and Orphan Drugs (ICORD 2010): Global Approach to Accessibility in Rare Diseases, Orphan Drugs and Neglected Diseases , Thursday, March 18, 2010 - Saturday, March 20, 2010
Location: Palais Rouge Convention Center, Palermo, Buenos Aires, Argentina
Description: For the first time, the VI International Conference on Rare Diseases and Orphan Drugs (ICORD 2010) was convened in the southern hemisphere in agreement with its aim of globalization of rare diseases research and orphan products development activities.
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.