We came to this decision after cross referencing the most widely spoken languages in the UK with ethnic groups that experience a higher incidence of SCD and found that we needed to prioritise translation into French and Portuguese. As this will enable them to not only understand the nature of their condition, in addition but also what help, support and care is available for them through our helpline our services.
The Breaking Down Barriers Project’s is managed by Alström Syndrome UK fellow members are; AKU society, Bardet-Biedl Syndrome UK, Ehlers-Danlos Support UK, Ectodermal Dysplasia Society, Huntington’s Disease Association, Jnetics, Niemann Pick UK, Wellchild and SWAN UK (syndromes without a name).
As a collective we met regularly to discuss development and updates in order to gain greater understanding of the impact of living with a genetic condition, in order to improve the standards of our service users and support by our service users.
The Breaking Down Barriers project has now ended but all the resources produced can be accessed for free below.