About the meetings
Being at risk of a disease which causes problems with memory and other skills raises all sorts of issues and concerns. There is often a sense of isolation when faced with these issues and few facilities are appropriate to this group’s specific need. The FAD Support Group is for families affected by autosomal dominantly inherited Familial Alzheimer’s Disease due to mutations in the PSEN1, PSEN2 or APP genes or APP duplications and is run through the National Hospital for Neurology and Neurosurgery. It currently holds a national meeting once a year in London.
At this meeting, the group offers information, advice, and opportunities for people with FAD and their families to meet each other and share experiences.
A newsletter is also published and circulated to members between meetings.
We hope that the support group will be widely recognised amongst genetic counselling services across the UK as a resource for all patients and their families affected by these genetic mutations.
We envisage developing and promoting forums for contact between members where appropriate, and hope that the group will have a part to play in raising awareness of FAD.
The support group is in relative infancy and is still evolving, and we welcome the input of its members in guiding the direction in which the group develops.