eNews March 2011
March 31, 2011
Volume 4, No. 3
In the February 2011 issue of Personalized Medicine, PXE International's Registry and BioBank (PIRB) was highlighted in an article titled, "Genetic Alliance Registry and BioBank: a novel disease advocacy-driven research solution." In 1995, PIRB was the only lay-run biobank of its kind, storing clinical data and biological samples. After several years of mentoring other disease organizations to form their own registries and biobanks, in 1999 PXE International determined that a new, cross-disease model was needed, where multiple organizations could share infrastructure and resources to facilitate and accelerate disease-specific research. By 2003 the Genetic Alliance Registry and BioBank (GARB) was formed to do just that, with PXE International's Registry and BioBank as a founding member. To be part of this great and groundbreaking initiative is both wonderful for our own research advancement but also significant in the ongoing effort to have clinical and biological information be useful to all those who wish to research it responsibly. Read more about how the BioBank is run, and the lessons learned along the way.
Want to participate in PXE research? Find out how .
April 6 Webinar - Women's Health Issues in PXE
Pregnancy, mammograms, HRT, calcium, oral contraceptives - women have many concerns about PXE. Dr. Lionel Bercovitch, Medical Director for PXE International, will present management guidelines and results of his published studies.
Women's Health Issues in PXE
Wednesday, April 6, 2011
7:00pm Eastern Daylight Time
Regional Meetings a Great Success
PXE International's first regional meeting of 2011, held February 23 in Irvine, CA, was a great success. Speaker Sharon Terry was very grateful to Private Access , a small patient-centric start up company, for the use of one of their conference rooms for the evening event. Twelve individuals and one tiny baby met each other and learned about PXE. For some PXEers, this was the first time they had met another person with PXE. That is always an amazing experience, even for those observing. More about Irvine .
One person drove six hours to join the small but excited group that met for PXE International's second regional meeting held March 17 at Genome British Columbia in Vancouver. Thank you, Genome BC! The group liked it so well, they decided to have another meeting soon. Join us on June 8 for the 2nd regional meeting in Vancouver. More about Vancouver .
PXE France will hold a day-long General Assembly meeting on June 25, 2011 at the new office of the Alliance of Rare Diseases in Paris. The day will begin with presentations from several medical specialists, including Dr. Ludovic Martin and Dr. Olivier Le Saux. The afternoon will continue with a discussion of administrative items ad ideas for upcoming project. For registration information, please email: firstname.lastname@example.org .