A message from CDG CARE:
CDG CARE is excited to share that we have recently launched a new Family Support Network for ALL families diagnosed with CDG. The CDG/NGLY1 global community has grown exponentially over the past 5+ years in the number of CDG families, the geographic regions we represent, and the CDG types and numbers of each that have been diagnosed.
With so many challenges and barriers to effectively reaching our CDG families, we cannot accurately represent our cause, help our families and advance research without uniting together! While we rely heavily on Facebook to disseminate information, many CDG/NGLY1 families have left social media over the past year; Facebook also now requires organizations to pay for each post if we want to reach everyone who has “Liked” our organization’s page; and multiple rare disease group studies have identified the most preferred communication to rare disease families is through email and regular virtual gatherings (which we intend to launch through this network soon!).
For our children, for our researchers, and for our CDG Community’s future…the CDG CARE Family Support Network has been created to help families connect and stand united to advance research and resources for ALL CDGs.
As ONE Community, and ONE Voice… WE ARE STRONGER TOGETHER!
So, please take a few moments, complete the short registration form on our website or access using the direct link below, and join the CDG CARE Family Support Network TODAY!
CDG CARE Family Support Network
Thank you for your commitment to help accurately represent and support our global CDG/NGLY1 Community!