Aims: To support patients and families and to promote clinical and basic research into Chorea Acanthocytosis and McLeod Syndrome, Services provided: Online patients Centre, providing information on diagnosis, help with daily life, how to sup port one another, how to help fundraise for research Library Newsletter Diagnostic testing International Registry on NA diseases Research grants…
UK
CDH UK
Provide support, information and advice on Congenital Diaphragmatic Hernia (CDH)
The Mountain Trike Company
Description of service and products sold: Custom built power assist and manual all terrain wheelchairs designed for accessing the outdoors, offering independence and freedom to explore outdoor destinations. The unique lever drive system of the Mountain Trike and MT Evo enables the rider to propel, steer and brake leaving you with clean dry hands whatever…
Independent Living Website
Website containing information on aids and equipment
SWAN UK (Syndromes Without a Name)
Services provided: Support and information on relevant news, studies and events Online platforms to link families such as private Facebook groups Free family events across the UK Educating professionals about undiagnosed genetic conditions and the unique challenges that families face.
Department for Work and Pensions Bereavement Service
Help people across the UK who are dealing with the death of a relative with benefits & pensions advice