Welcome to the CDG Community! We encourage our newly diagnosed families to Click HERE, or on the image below, to access CDG CARE’s NEW Online Patient Brochure. Please also send as an email at info@cdgcare.org to receive a list resources to help you navigate this website, important highlights and helpful contacts for your family throughout this journey!
» JOIN the CDG CARE Family Support Network and CONNECT with CDG & NGLY1 families around the globe TODAY!
» To support CDG CARE and sport year-round CDG apparel, visit the CDG CARE Merchandise Store by Clicking HERE, or on the link below!
» To access the most up-to-date scientific resource designed for CDG researchers, clinicians, patients and families, visit CDG Hub and sign up for the CDG Hub newsletter by clicking on the link below:
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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 Engages FDA in Patient Listening Session: April 25, 2023
On January 30, 2023, CDG CARE engaged the U.S. Food and Drug Administration (FDA) in a Patient-Led Listening Session to share the burden of CDG and the needs of our community. During the session, representatives from CDG CARE and the broader community shared their personal experiences of living with CDG, their diagnostic challenges, and the physical and emotional toll that CDG has on their families. Through this opportunity, parent and professional advocates joined together to educate the FDA on CDGs and we expressed our commitment to bring the patients’ perspective to every stage of therapeutic development and approval. To read the full FDA Session Summary: Download the PDF HERE.
Travel Support & 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 and worldwide who are all members of the Frontiers in CDG Consortium (FCDGC). At these centers, newly diagnosed and veteran patients receive comprehensive care management based on their specific CDG type and learn about the most up to date therapies, treatments and research opportunities available in the field of CDG. CDG CARE also offers travel support for families to receive expert consultation from the CDG specialists at our research centers. To access the CDG CARE travel application form, Click HERE. And to learn more about a CDG Specialty Clinic near you, please visit our Community page for resources and instructions on how to make an appointment, or send us an email at info@cdgcare.org.
