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Close Photo from SDMC meeting Nov 2015
Close Photo from SDMC meeting Nov 2015
Close Photo from SDMC meeting Feb 2014
Close Photo from SDMC meeting Feb 2014
Close Photo from SDMC meeting Feb 2014
Close Photo from SDMC meeting Feb 2014
Close Photo from SDMC meeting Feb 2014
Close Photo from SDMC meeting Feb 2014
Close Photo from SDMC meeting Feb 2014
Close Photo from SDMC meeting Feb 2014
Close Photo from SDMC meeting Feb 2014
Close Photo from SDMC meeting Feb 2014
Close Photo from SDMC meeting Feb 2014
Close Photo from SDMC meeting Nov 2015
Close Photo from SDMC meeting Nov 2015

November 3-4, 2017

Objective: Development of a consensus guideline for management of patients with type II collagen disorders
Hosted by Seattle Children's Hospital
Held at the Washington Athletic Club

Thank you to the following organizations for supporting the November 2017 meeting in Seattle, Washington:

   
   
 

Montchanin Inn & Spa, Montchanin, Delaware, November 4-5, 2016

SDMC members and invited experts met at Montchanin Inn & Spa to discuss management of pregnancies involving skeletal dysplasia.

Hosted by: Nemours/Alfred I. duPont Hospital for Children
Delaware

The 2016 SDMC meeting took place at the Montchanin Inn & Spa in Delaware, located near Nemours/Alfred I. duPont Hospital for Children. The outcomes of this meeting with be a publication about managing all stages of pregnancy in patients with skeletal dysplasia and pregnancies where it is anticipated that the fetus has skeletal dysplasia.

Members of the SDMC invited Judy Rossiter, MD, Obstetrics and Gynecology, Maternal & Fetal Medicine/High Risk, Reproductive Genetics/Prenatal Genetics, Chief in the department of Obstetrics and Gynecology at the University of Maryland St. Joseph Medical Center and Deborah Krakow, MD, Clinical Genetics, Obstetric and Gynecology, Maternal and Getal Medicine at Ronald Reagan UCLA Medical Center to advise about this important topic. Viviana Bompadre, PhD, Research Manager, Seattle Children's Hospital, led the Delphi discussion.

Development of the resulting manuscript is currently underway, with submission anticipated by July, 2017.

   

Camp Korey, Carnation, Washington, November 5-6, 2015

The outcome of this meeting will be a publication with the working title Perioperative Care for Patients with Achondroplasia.

SDMC members met at Camp Korey in Carnation Washington, a camp that hosts an annual summer camp for children with achondroplasia, to discuss the perioperative care of patients with achondroplasia. Viviana Bompadre, PhD, Research Manager, Seattle Children's Hospital, led the members through a Delphi Process and an involved discussion about this important topic.

In addition to SDMC members, Mary Theroux, MD, Pediatric Anesthesiology at Nemours/Alfred I duPont Hospital for Children, Gregory Redding, MD , Pulmonary and Sleep Medicine at Seattle Children's Hospital, Melita Irving, BSc(Hons) MB.BS MRCPCH, Clinical Genetics at Guy’s and St Thomas’ Hospital provided their valuable expertise in developing these guidelines.

Submission of the resulting manuscript is expected by August, 2016.



Photo from SDMC meeting Nov 2015 Photo from SDMC meeting Nov 2015


   
     
     
Michael Goldberg
Skeletal Dysplasia Fund
 

Hospital for Special Surgery, New York City, NY October 10-11, 2014


The outcome of this meeting was a publication in the American Journal of Medical Genetics Part A, titled Best practices in the evaluation and treatment of foramen magnum stenosis in achondroplasia during infancy. Am J Med Genet A. 2015 Sep 23. doi: 10.1002/ajmg.a.37394.


During the October 2014 SDMC meeting held at the Hospital for Special Surgery in New York City, SDMC members and invited specialists, including Dr. Jeffery Campbell, Pediatric Neurosurgeon at Nemours/Alfred I duPont Hospital for Children and Dr. David Rapaport, Pulmonologist at the New York School of Medicine, underwent a Delphi Process led by Viviana Bompadre, PhD, Research Manager, Seattle Children’s Hospital, to develop a manuscript titled Best Practices for the Management of Foramen Magnum Stenosis in Individuals with Achondroplasia.

Michael Goldberg
Skeletal Dysplasia Fund

Inaugural Meeting

Below are photos from our first meeting held at Camp Korey in Carnation, Washington on Friday, January 31, 2014 and Saturday, February 2, 2014.



Photo from SDMC meeting Feb 2014 Photo from SDMC meeting Feb 2014 Photo from SDMC meeting Feb 2014


Michael Goldberg
Skeletal Dysplasia Fund

November, 2018

Australian SDMC meeting
Melbourne, Australia
Held at Melbourne Convention and Exhibition Centre
Convenor: Ravi Savarirayan