Family Education & Medical Travel / Equipment Support Programs
CDG CARE is currently accepting a limited number of applications for our Family Education & Medical Travel Support Program on a case-by-case basis and as funds are available. This program is designed to help individuals diagnosed with CDG and their families:
1) Attend a CDG CARE Scientific & Family Conference in the USA; or
2) Improve access to an initial clinical consultation with a CDG medical expert due to unique and/or urgent medical circumstances.
Due to increasing demand and limited funding, families seeking travel assistance are kindly asked to submit an inquiry at least 60 days prior to planned travel to allow adequate time for review and consideration. Please note that requests for reimbursement submitted after travel has occurred, without prior application and approval, unfortunately cannot be considered. To request an application for support through this program, please email info@cdgcare.org.
Canadian Clinical Travel Support – CDG CARE is also pleased to offer Canadian families affected by CDG the opportunity to request travel support for evaluation at the Frontiers in Congenital Disorders of Glycosylation Consortium (FCDGC) clinic location in Alberta, Canada. This program is intended to help improve access to specialized CDG care for families residing in Canada. To request the application for Canadian families, please email info@cdgcare.org.
Emmett’s Legacy Fund Program
The 2026 Emmett Legacy Fund application cycle is now closed. Through the 2026 program, 23 families from around the world were awarded support to help obtain medical and therapy equipment that improves the quality of life for individuals diagnosed with CDG or NGLY1-deficiency.
Created in honor of Emmett Nguyen (2016–2020), who was diagnosed with PIGA-CDG, the Emmett Legacy Fund celebrates Emmett’s life by helping other families access meaningful equipment and resources that support daily care, mobility, communication, comfort, and participation in everyday life.
CDG CARE and the Nguyen family are deeply honored to continue Emmett’s legacy through this meaningful program. We anticipate that the next round of applications will open in early 2027. Please check back for updates and future funding opportunities.
Additional Patient Friendly Resources
The Life of a Special Needs Sibling: CDG CARE is honored to offer the rare disease community this educational and supportive family resource webinar. You can view the presentation on the CDG CARE YouTube Channel HERE, and/or access the pdf version of the slides with links to each sibling resource by clicking: CDG CARE 2021 Webinar 2_Life of a Special Needs Sibling
*Children’s Hospital of Philadelphia (CHOP) launches new educational website for families on the East Coast diagnosed with CDG! To learn more about the CHOP Center for CDG and services provided by Dr. Andrew Edmondson and his Team, CLICK HERE.
*For our families who have been diagnosed with PIGA-CDG, we are honored to share a very unique resource that has been developed by members of the growing PIGA-CDG Community. Please visit their website by CLICKING HERE and learn about advancements in PIGA research, obtain educational materials, communicate through a message center and view and share a very helpful whiteboard video that helps to explain PIGA-CDG!
2026 CDG Education & Research Miniseries Now Available HERE
2016, 2018 & 2020 CDG Family Post-Conference Educational Video Series
CDG Holiday Gift Guide – for links to a variety of great gift ideas any time of year!
American Association on Intellectual and Developmental Disabilities
Kids’ Waivers: Your Source for Children’s Medicaid Waiver Programs
What is Congenital Disorders of Glycosylation (CDG)? How missing “sugar trees” cause a rare disorder.
Frequently Asked Questions
How many cases of CDG are known in the United States and worldwide?
Bianca, age 4
In the United States, we estimate that there are close to 350 diagnosed cases of CDG. Globally, the estimate is in the range of 1,800 patients.
What is a stroke-like episode?
A stroke-like episode is an acute event that very much resembles a stroke. A stroke is a sudden loss of consciousness due to an acute vascular disturbance caused by the rupture of an artery in the brain or its obstruction by a blood clot (embolism or thrombosis); we think that in CDG these episodes are due to a transient local thickening of blood. It can present in several ways: drowsiness, dullness, sub coma, coma, paralysis (on one side (hemiparesis, hemiplegia) or on both sides), loss of vision.
Are there ever any long-lasting effects?
These episodes can last for hours, days or sometimes even longer. However, the positive thing is that, as a rule, they are transient.
What action should parents take during one of these episodes?
Action to be taken – measure body temperature and ask your (or another) physician to examine your child as soon as possible in order to make the diagnosis and to take appropriate measures.
Who is likely to have a stroke-like episode and when are they likely to occur?
In the CDG field all the patients with CDG-Ia have an increased risk for thrombosis because their blood platelets have an increased tendency to stick together and to stick to the wall of blood vessels; for the other CDG-I patients this risk is probably also increased but this has not yet formally been proven also because we know only a small number of these patients. These episodes are most likely to occur on occasion of an infection (viral or bacterial); so these episodes are often accompanied by fever.
Is there a suggested therapy to prevent of help these episodes?
Medical treatment and prevention are possible, but it is up to the treating physician to decide about the treatment.
What is the difference between a stroke-like episode and a seizure?
A seizure is the expression of an abnormal electrical activity in the brain (stroke is a vascular problem) but can resemble a stroke. Other words for “seizures” are “epilepsy” and “convulsions”.