Cutaneous T-cell lymphoma
Other Names for this Disease
The Spectrum of Caregiving and Palliative Care in Rare Diseases, Winter 2014
Location: NIH Natcher Conference Center, 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.
Strategies to Develop Therapies for Rare Tumors: Small Numbers, but Big Opportunities , Fall 2014
Location: NIH Natcher Conference Center, Bethesda, MD
Description: <span style="font-size: 11pt; font-family: Times New Roman,serif;">The goals of this symposium are to increase communication and build networks between researchers working in rare tumors across NIH, and to get input from patient groups, industry, and the FDA on how to overcome the biggest hurdles in the development of therapies for rare tumors. The Rare Tumors Initiative at NCI, CCR will use this information to prioritize goals for the future and will prepare a white paper summary to help guide researchers worldwide.</span>
Advancing Symptom Clusters Research on Rare Cancers, Wednesday, September 10, 2014
Location: NIH Neuroscience Building, Bethesda, MD
Description: <p>It is intended that the in-depth, interdisciplinary dialogue of this expert working group will formulate an emerging consensus on a working definition of symptom clusters and, specific gaps and opportunities that provide a foundation for a transformative strategic blueprint to guide future symptom cluster research in rare cancers. In addition, it is anticipated that workshop proceedings will inform a funding opportunity announcement.</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.
Overcoming Barriers to International Clinical Trials for Rare Cancers , Friday, December 10, 2010
Location: Bethesda, Maryland
Description: The goals of this conference were to introduce key institutional players to the topic of international clinical trials in rare cancers and to establish an ongoing dialogue. Participants left the meeting with a set of specific priorities that need to be enacted to promote these trials. The meeting promoted consensus on the way that resources are prioritized to address rare cancers. Participants were asked to convey the content of the meeting to their constituencies and to follow up with pilot concepts.
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.
Etiology of Rare Subtypes of Non-Hodgkin Lymphoma: An Interlymph Workshop, Monday, July 28, 2008 - Thursday, July 31, 2008
Location: Sydney, Australia
Description: The overarching goals of this conference were to identify specific risk factors that explain most of the occurrences of each of the rare NHL subtypes and to ascertain specific risk factors that may be linked with more than one subtype to better understand the determinants of lymphomagenesis. Scientific collaborations achieved from this meeting were aimed at enhancing interdisciplinary research in this understudied area of research.
Immunotherapy for Cutaneous T-Cell Lymphoma (CTCL), Saturday, May 06, 2006 - Sunday, May 07, 2006
Location: Holiday Inn Express, Philadelphia, PA
Description: The cutaneous T-cell lymphomas represent a group of rare, non-Hodgkin’s lymphomas that are primarily localized to skin or have overt skin manifestations along with internal involvement. They are represented by mycosis fungoides, Sezary syndrome, CD30-positive skin lymphomas, and other variants. No treatment has been shown to be curative. Although most individuals have indolent disease, those with advanced disease obtain only partial, short-term benefit from chemotherapy and often die of disease or its most severe complication—infection and sepsis. There are several reasons to believe that cutaneous T-cell lymphomas may respond to or benefit from immunotherapy or immunoregulatory therapy. The goals of this conference were to educate the audience about new immuno-based therapies and strategies for CTCL and to bring together researchers and clinicians who treat CTCL to formulate strategies for clinical trials based on information disseminated in the meetings.