Rare Dementia Support offers regional support groups to provide localised groups across the rare dementias throughout the UK. These groups have been formed to decrease the sense of isolation; to facilitate sharing of situations, experiences, feelings, and ideas with others – those people living with the rare dementia and their families, friends, and carers.

The regional support groups are facilitated by regional facilitators who are volunteers – many are non-professional support group members and some are from the medical/professional community who have experience with rare dementias and act as volunteers in the regional support groups.

Regional facilitators play an important and valued role, giving their time to provide one-on-one telephone and email support, manage local meetings, and provide social opportunities for those who are unable to travel into London for the support group meetings.

The model for regional support groups vary widely. Examples of our current groups include:

  • Carer-led meetings that may be purely social gatherings for people living with dementia and their carers/family/friends
  • Carer-led meetings that provide program content from professionals with updated research, advice, and information as well as social gatherings
  • Professional-led meetings that provide program content from other professionals and also include socialisation during the meetings

Regional contact facilitators provide a voluntary contact service from a posistion of either personal or professional experience of FTD.They are not employed by the Support groupbut may be able to off awareness of regional facilities as well as their personal/professional experience on a voluntary basis for members who wish to make contact. Some regional contacts also facilitate local meetings. We currently have regional contacts in the following areas and have listed their contact details below:



Click on the logo to find local information, meeting schedules, and other contact details about the regional support groups available within each of these rare dementias.

For questions or information, please contact Roberta McKee-Jackson, Coordinator of regional support groups, at r.mckee-jackson@ucl.ac.uk