We can provide you with practical advice and support so please get in touch. The Portuguese Association for CDG have created this Practical Guide for CDG families, which you may find useful for background information on CDG.
Please get in contact if you would like to sign up to the newsletter or join the Facebook group.
We work with top specialists and other charities to stay informed about the latest developments and promote CDG research. We work closely with our patron, Dr Stephanie Grünewald of Great Ormond Street Hospital (UK), and Dr Donna Krasnewich of the National Institute of Health (USA).
Birmingham Children’s Hospital is home to the UK’s first rare disease centre where children and young people with rare diseases can access highly coordinated multidisciplinary and multi-specialty rare disease clinics together with peer support and consistent access to research, information and treatment: https://bwc.nhs.uk/rare-diseases
We also work in partnership with the Portuguese Association CDG and Rare Metabolic Diseases (APCDG-DMR), a global voice to fight the impact of Rare Metabolic Diseases on affected individuals and their families. Every two years they host the World Conferences on CDG for healthcare professionals and families.
Also on Facebook, is the CDG Global Alliance. This is a private group where families from all over the world communicate and share their stories. This is a very active and supportive forum, and members are very responsive to any questions you post. There are also CDG professionals who are members of the group giving expert advice. CDG Care, a USA based organisation run this group: www.cdgcare.com.
Other countries also have CDG organisations, and a list of these can be found at www.rareconnect.org/en/community/cdg/members.