- Bullous acrokeratotic poikiloderma of kindler and weary
- Congenital bullous poikiloderma
- Congenital poikiloderma with bullae, Weary type
- Hereditary acrokeratotic poikiloderma, Weary type
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ORDR Co-Sponsored Conferences
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>
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.