CDG CARE (Community Alliance and Resource Exchange) is a nonprofit 501(c)(3) organization founded by parents seeking information and support for a group of disorders known as Congenital Disorders of Glycosylation (CDG).
Our mission is to promote greater awareness and understanding of CDG, to provide information and support to families affected by CDG, and to advocate for and fund scientific research to advance the diagnosis and treatment of CDG.
We will uphold our mission by:
- Providing information and support to individuals diagnosed with CDG, their families, and the professionals who work with them
- Increasing public awareness and understanding of CDG
- Developing a resource of programs and services to help individuals build strengths and meet challenges from early childhood through adulthood
- Encouraging and supporting research into a wide range of issues related to CDG
Our Vision… Where CARE Grows…
- CARE Grows… with every new patient who is properly diagnosed
- CARE Grows… as donor commitment broadens to support new educational and research opportunities
- CARE Grows… with every medical and therapeutic advancement that leads to improved care
- CARE Grows… as global collaboration and partnerships raise awareness and strengthens the future for our Community
Board of Directors
Karen Morici (Board Chairperson)
Community and Parent Representative
South Elgin, Illinois
Kara Berasi, PharmD, MS (Board Vice Chairperson)
Community and Parent Representative
Pinehurst, North Carolina
Christa Doot Thoma (Board Treasurer) – Advisory Board Member
Community and Parent Representative
Irvine, California
Heather Conneran
Community and Parent Representative
Champlin, Minnesota
Amy Dann
Community and Parent Representative
Shepparton, Victoria
Australia
Lewis Franklin
Community and Parent Representative
Parker, Colorado
Ashleigh Linthicum
Community and Parent Representative
Hampstead, Maryland
Meral Omurtag, MD
Community and Parent Representative
San Diego, California
Karen Oosterhous
Community and Parent Representative
Pittsburgh, Pennsylvania
Andrea Miller, JD, MHA (Ex-Officio)
CDG CARE President & Founder, Community and Parent Representative
Colorado Springs, Colorado
Medical Advisory Board
Clement Chow, PhD
Associate Professor, Department of Human Genetics
University of Utah
Salt Lake City, Utah
Canice E. Crerand, PhD
Assistant Professor, Department of Pediatrics and Plastic Surgery
The Ohio State University College of Medicine and Center for Biobehavioral Health, The Research Institute at Nationwide Children’s Hospital
Columbus, Ohio
Andrew C. Edmondson, MD, PhD
Attending, Human Genetics and Metabolism
Children’s Hospital of Philadelphia
Philadelphia, Pennsylvania
Hudson H. Freeze, PhD
Professor and Director, Genetic Disease Program
Sanford Children’s Health Research Center
Sanford-Burnham-Prebys Medical Discovery Institute
La Jolla, California
Christina T. Lam, MD
Assistant Professor, Biochemical Genetics
Division of Genetic Medicine, Department of Pediatrics
University of Washington and Seattle Children’s Hospital
Seattle, Washington
Ivan Martinez Duncker, MD, ScD
Research Professor, Cell Dynamics Research Center
Head of Human Glycobiology & Molecular Diagnosis Laboratory
Morelos State Autonomous University
Cuernavaca, Morelos, Mexico
Matthew Might, PhD
Director and Endowed Chair of the Hugh Kaul Precision Medicine Institute
Professor of Department of Medicine
Professor of Computer Science
University of Alabama at Birmingham
Birmingham, Alabama
Bradley S. Miller, MD, PhD
Professor of Pediatric Endocrinology
University of Minnesota Masonic Children’s Hospital
Minneapolis, Minnesota
Eva Morava, MD, PhD
Professor of Pediatrics
Clinical Biochemical Geneticist
Senior Associate Consultant, Department of Clinical Genomics
Mayo Clinic Children’s Center
Rochester, Minnesota
Bobby G. Ng
Human Genetics Program
Sanford Children’s Health Research Center
Sanford Burnham Prebys Medical Discovery Institute
La Jolla, California
Lynne A. Wolfe, MS, PNP, ACNP, BC
Senior Nurse Practitioner
National Institutes of Health/National Human Genome Research Institute
Bethesda, Maryland
Contact Us
CDG CARE
Attn: Andrea Miller, President
P.O. Box 38832
Colorado Springs, Colorado 80937-8832
Phone: (866) 295-7910
Email: info@cdgcare.org
Disclaimer
The CDG CARE website is a forum for the free expression of ideas created by, and for, parents of children diagnosed with Congenital Disorders of Glycosylation. The information provided on this website should not be used as a substitute for seeking a professional medical diagnosis, treatment or care. You should not rely on any information provided through this website as a replacement for medical consultations with qualified health professionals. Additionally, no logos, pictures, videos or text contained herein shall be used or copied, including fundraising efforts, without the express permission of CDG CARE.
Privacy Policy
CDG CARE is committed to protecting the privacy of visitors to our website. We respect and protect the privacy of all who visit, use and submit information to the CDG CARE website. Individually available information about you is not disclosed to any third party without first receiving your permission.
