On February 27, 2014, in the online publication of Genetics in Medicine, Loeys-Dietz syndrome: a primer for diagnosis and medical management was published and authored by Gretchen MacCarrick and members of the LDSF MAC. Download the PDF here.
View video presentations by medical professionals or those impacted by LDS.
2012 LDSF Conference June 30, 2012 in Baltimore, Maryland USA. View medical presentations by Dr. Hal Dietz, Dr. James Black, Dr. Paul Sponseller, Dr. Duke Cameron, Dr. Pamela Frischmeyer-Guerrerio and Dr. Anthony Guerrerio on our YouTube channel.
The LDS Journey – In 2011, some of our families gathered to talk about their journey with LDS and to film a short video about their experiences and the hope they have. A special thanks to Alex at Fifth and Main Productions for his time and talents in making this video.
Shriner’s Medical Presentation – On September 29, 2011, Dr. Hal Dietz and Dr. Paul Sponseller (head of orthopedics at The Johns Hopkins University) made a 90-minute presentation to the Chiefs of Staff for the Shriners Network to present about LDS and raise awareness. Dr. Peter Armstrong, Chief Medical Officer of the Shriners Network of Hospitals allowed, the LDSF to use his monthly management meeting to communicate the importance of LDS to his medical staff.
Q & A – In 2010, Peter Donato, a teen with LDS, discussed his experience at the Living Successfully Panel at the 2010 National Marfan Foundation Conference in Houston, Texas.
Informationen på denna sida och dess undersidor är med deras tillstånd, direkt hämtade från Loeys-Dietz Syndrome Foundation i USA. Sidorna kommer att översättas till svenska efterhand, men tills dess väljer jag att presentera all information på originalspråket.