Supporting families affected by DiGeorge syndrome,VCFS and 22q11.2 deletion.
We are a National Registered Charity (No. 1088432), set up in 1999 by a group of families at Birmingham Children’s Hospital. We have grown very quickly and are now an established source of information and support around the UK and abroad. You will find us referenced in the Contact a Family Directory.
We provide support for DiGeorge syndrome, Velo-Cardio-Facial syndrome, Shprintzen syndrome and all forms of 22q11.2 deletion including the 22q11.2 form of Opitz G/BBB syndrome.
- A wide range of information, including a comprehensive handbook covering the main, or more commonly noted, aspects of this very variable group of conditions.
- A freephone number manned by a Speech and Language Therapist who is also the parent of a child with DiGeorge syndrome.
- Contact with other families and support to regional and local groups.
- A regular newsletter that has a circulation of 1,000 copies.
We are also developing international and research links.
Trustees meeting are held at City Road Hospital in Birmingham five times a year. Trustees are elected at the AGM, which is held at a different location each year to ensure that members from all over the country can attend. The AGM is conducted during our Conference and Christmas party usually on the last Saturday in November.Email: firstname.lastname@example.org Website: www.maxappeal.org.uk Phone: 0300 999 2211