Comment: | The UK FSP Support Group is a self-help group that aims to encourage and support those families affected by Familial Spastic Paraplegia (also known as Hereditary Spastic Paraplegia (HSP), Familial Spastic Paraparesis or Strumpell-Lorrain Syndrome). Members of the Group come primarily from the UK although there are some international members from Ireland and France. They also have a number of professional associates. Currently the group consists of over two hundred members. The Group produces a quarterly newsletter, holds a national meeting which includes an Annual General Meeting, runs twelve local support groups, has a library of information about FSP and operates a national helpline. The helpline can give information and support, particularly at the initial stage of diagnosis of this rare condition. The helpline is run by an experienced counsellor. The UK FSP Group aims to inform members of new advances in understanding FSP |
