Medical Advisory Concil (MAC)

Medical

In order to provide guidance to the medical community internationally, the LDSF and LDSF-Canada have worked to create a joint Medical Advisory Council (MAC). The objective of this Council is to provide guidance to the Foundations in order to further our common mission of encouraging education about LDS and related connective tissue disorders, fostering research and providing support for patients, parents and families impacted by Loeys-Dietz syndrome (LDS).

Since LDS is a multisystem disorder, our objective was to create a MAC with medical representation from the various subspecialties coupled with relevant connective tissue expertise. In addition, we are building one MAC that will have international scope and reach.

The members of our MAC include:

Dr. Hal Dietz, Chair
Genetics/Cardiology
Johns Hopkins University, USA

Dr. Eloisa Arbustini
Genetics/Cardiology
University of Pavia, Italy

Dr. James Black
Vascular Surgery
Johns Hopkins University, USA

Dr. Sarah Bowdin
Genetics
Sick Kids, Canada

Dr. Ismail El-Hamamsy
Cardiovascular Surgery
Montreal Heart Institute, Canada

Dr. Pamela Frischmeyer-Guerrerio
Pediatric Allergy & Immunology
Johns Hopkins University, USA

Dr. Anthony Guerrerio
Pediatric Gastroenterology
Johns Hopkins University, USA

Dr. Bart Loeys
Genetics
University of Antwerp, Belgium

Dr. Hiroko Morisaki
Genetics
National Cerebral & Cardiovascular Center Research Institute, Japan

Dr. Takayuki Morisaki
Cardiology
National Cerebral & Cardiovascular Center Research Institute, Japan

Dr. Paul Sponseller
Pediatric Orthopedics
Johns Hopkins University, USA

 

Responsibilities of MAC members to the Foundations include:

  • Support and advance our mission
  • Create and provide ongoing review of medical guidelines for LDS
  • Review medical resources created by the Foundations
  • Help review Foundation-initiated research projects
  • Support each Foundation with respect to potential research grant applications
  • Mentor and foster interest in future generations of medical professionals/researchers in LDS

 

Responsibilities of the Foundations to the MAC include:

  • Support appropriate research initiatives through patient recruitment, letters-of-support, etc.
  • Provide education, support and research strategies in a transparent format
  • Provide timely responses to the MAC’s requests and needs

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.
www.loeysdietz.org