Family information directory

The Gorlin Syndrome Group is a support network offering guidance and information to patients, their families, and carers whose lives are affected by Gorlin Syndrome.   Read more

Supporting young people who face additional challenges can be difficult at times, and with that in mind, the Hope Service has created a virtual space for groups of parents and carers to come together to discuss the challenges they face.  The groups give the opportunity to… Read more

The Erb’s Palsy Group is a registered charity offering advice, information and support to families affected by Erb’s Palsy. The Erb’s Palsy Group give support to parents, adults, and children, put parents in contact with each other and hold annual events for families. It also produces information… Read more

Group B Strep Support (also known as GBSS) is a charity registered in the UK dedicated to working to stop group B Strep infections, including meningitis, in babies. Our goal is the eradication of group B Strep infection in babies. Read more

A group which provides through its website information and support to adults coping with a Trauma Brachial Plexus Injury (TBPI). Read more

The Primary Ciliary Dyskinesia (PCD) Family Support Group is a registered charity formed to provide support to patients and their carers who have or are suspected of having PCD. It promotes research into the diagnosis and treatment of PCD and offers support through an online community.… Read more

Myotonic Dystrophy support group offers friendship and support to all those affected by Myotonic Dystrophy. The charity has a central helpline and contacts throughout the UK as well as links abroad. Read more

The Arthrogryposis Group (TAG) offers contact, support, and information to people affected by Arthrogryposis Multiplex Congenita (AMC). Read more

The Kawaski Support Group is a registered charity which provides support for families of children with Kawasaki syndrome. Read more

Addison’s Disease Self Help Group is a national charity which offers advice and support to people diagnosed with Addison’s disease (or adrenal insufficiency). It provides information news and publications on its website, as well as a living well forum. Read more