CDG Specialty Clinics Throughout the USA
The CDG Community is fortunate to have multiple experienced and dedicated clinicians who have worked hard to establish CDG Specialty Clinics throughout the United States. To learn more about a CDG Specialty Clinic near you, please follow the links below.
In addition to these Centers, we also have a team of CDG experts available to provide collaborative care through the Frontiers in CDG Consortium (FCDGC). To learn more about the FCDGC and find a physician near you, visit the new FCDGC website HERE.
The Mayo CDG Clinic in Rochester, MN
The Mayo Clinic Congenital Disorders of Glycosylation (CDG) Clinic team is led by Dr. Eva Morava and sees more patients with CDG than any other practice in the United States. Patients who travel to this specialty clinic will receive care coordinated through multiple departments, including specialized genetic consultation and pediatric neurology, as well as receive the latest information pertaining to research advancements and opportunities specific to CDG families. You can learn more about the Mayo CDG Clinic by visiting the Clinic website HERE.
To make an appointment at the Mayo CDG Clinic, please call the central appointment office at 507-284-2111 to complete the patient registration, or you can Request an Appointment online by clicking HERE. After your registration is completed, you will then call the Mayo Genetics Clinic Scheduler at 507-284-8198 for scheduling instructions specific to the CDG Clinic. Once you have your appointment scheduled, you should review the CDG Clinic’s Initial Clinic Preparation List which is available HERE prior to your visit.
CDG Clinic at Children’s Hospital of Philadelphia (CHOP)
The CHOP CDG Clinic team is led by Dr. Andrew Edmondson and is a specialty clinic where newly diagnosed and veteran families can receive expertise in CDG diagnosis, treatment and care through the CHOP Division of Human Genetics. To learn more about the services and patient care provided by the CHOP team, please visit the Clinic website HERE. To make an appointment for a CDG consultation or referral to Dr. Edmondson, please call the appointment line at 215-590-3376.
CDG Specialty Clinic at Seattle Children’s Hospital (SCH)
The SCH CDG Clinic is a specialty clinic within the Biochemical Genetics Division of Seattle Children’s Hospital led by Dr. Christina Lam. The goal of this clinic is to provide recommendations and guidance to the home care team regarding appropriate management, testing, and monitoring for individuals affected or highly likely to be affected with CDG. At the clinic, families are also provided information about their diagnosis and the opportunity to ask questions as well as connect with the CDG research community and advocacy groups if desired. You can learn more about the conditions treated and services provided by sending inquiries to CDGClinic@seattlechildrens.org and clicking on the Clinic website HERE. To make an appointment for a CDG consultation or referral to see the Clinic’s CDG medical expert, Dr. Christina Lam, please call the appointment line at 206-987-3012.
Partners and Patient Groups
Online and email communities offer an important means of connecting quickly with patients, families, and professionals to discuss and share information related to CDG. Many of our global association partners also offer awareness and resources materials in their own geographical region. We are fortunate to have several trusted partners and encourage you to seek information and support by clicking on our partner’s links below:
Join the CDG Global Alliance – a private Facebook group for parents, patients and immediate caregivers of individuals who have a confirmed diagnosis of CDG.
Like and Follow the CDG CARE Facebook Page – a public Page open to all families and community supporters to help keep current with the latest news, research and opportunities within the CDG Community.
CDG CARE’s NGLY1 Facebook Page
CDG Patient Representatives:
“CDG Australia” Contact Merell Liddle
“CDG Netherlands” Contact Bas Holten
“CDG Ecuador” Contact Ernesto
“CDG Greece” Contact Tanya Kuzmanova
“CDG Israel” Contact Martha Haimo
Additional Rare Disease Community Partners:
NIH – Office of Rare Diseases Research
National Organization for Rare Diseases (NORD)