What is PXE: What research is being conducted on PXE?
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This is an exciting time for PXE research. The gene associated with PXE was identified 20 years ago and genetic testing for PXE is available.
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This is an exciting time for PXE research. The gene associated with PXE was identified 20 years ago and genetic testing for PXE is available.
Clinical trials are structured research experiments used to advance medical knowledge and patient care. This means that there is a very clear and well-formulated process to test something that might be useful in treating a condition. Trials often investigate new treatments, interventions, therapies and approaches to a disease or symptom. They might also compare the effectiveness of different treatments, for example, does one drug relieve leg cramping more than another.
PXE International gathered over 50 researchers from around the world to discuss the latest and greatest of PXE research. Presentations of new data from labs across the globe shared exciting advancements and new avenues of research. The group left feeling invigorated and energized to continue pushing forward toward a treatment for PXE. We would like to thank our sponsors at the NIH (NCATS, NEI, and NIAMS) as well as Thomas Jefferson University for hosting the event.
The 2014 Biennial PXE Research Meeting took place in Bethesda, Maryland on September 22-23, 2014. This was a very exciting meeting because the last year saw some very meaningful breakthroughs in translating basic science into potential clinical applications. Experts in many disciplines convened to determine the plans for future research and clinical studies. This workshop also helped to determine the fundraising strategy for the next several years.
The principal researchers working on PXE from laboratories around the world convened in Bethesda, Maryland, USA, on September 24-25, 2012 to participate in the 2012 PXE Research Meeting organized by PXE International, the premier lay organization advocating on behalf of PXE patients and their families.
On November 29-30, 2010, PXE International held a sponsored gathering of some of the most prominent PXE scientists in the world. Over the course of this two-day meeting, the large group presented their collective progress to date and their ongoing research efforts in the understanding of pseudoxanthoma elasticum, related scientific areas, and activities toward the development of a treatment.
On September 9, 2009, as part of the 39th annual meeting of the European Society for Dermatological Research (ESDR), PXE International sponsored the second “Satellite Symposium on Pseudoxanthoma Elasticum” held at Semmelweis University in Budapest, Hungary. The meeting chairs were Dr. Jouni Uitto, Department of Dermatology and Cutaneous Biology, Jefferson Medical College, Philadelphia, PA; Dr.
A two-day symposium entitled "International Centennial Meeting on Pseudoxanthoma Elasticum" was held in Bethesda, Maryland on November 6-7, 1997. This meeting was organized on the premise that significant progress had been made in pseudoxanthoma elasticum (PXE) research. The purpose of the meeting was to bring together investigators for an open exchange regarding recent advances. Topics included genetics, cell biology, elastic fibers, and clinical aspects of PXE. Results of this meeting guided further research in the field.
Individuals affected by PXE generally show a great deal of variety in the severity of symptoms, even between family members. On June 10, 1992, 40 prominent researchers and physicians working on PXE attended a consensus conference at the Jefferson Memorial College in Philadelphia, Pennsylvania to discuss and characterize the criteria used to diagnosis PXE as well as further directions for research on PXE. Dr. Jouni Uitto, of the PXE International Research Consortium, chaired the conference. The featured speaker of the conference was Dr.