Information needed from people with Friedreich’s ataxia (and families and carers) – please help

Ataxia UK is again working with Genetic Alliance UK to provide information to the Human Fertilisation and Embryology Authority (HFEA). The HFEA has received an application to licence preimplantation genetic diagnosis (PGD) for Friedreich ataxia. This means that a couple in the UK, with a family history of the condition, have applied to use PGD to have a child who would be free from the condition. You can find out more about the reproductive technique, preimplantation genetic diagnosis, here

When the HFEA committee makes a decision on whether to licence PGD they make this decision based on whether they think that the condition is ‘sufficiently serious’. We provide statements to the HFEA detailing the effects on an individual from the perspective of patients (rather than the clinical aspects of a condition). To fairly represent the ways that some patients could be affected by the condition, we outline the worst case scenario for those affected.

It is important to provide some patient voice on the issue, and to aid us in this work Genetic Alliance UK have developed a survey which we would be really grateful if you could fill in. The answers from the survey will be used to help Genetic Alliance UK and Ataxia UK develop a statement detailing the way that the condition affects those who have the condition from a social and psychosocial point of view. This would then be submitted as evidence to be considered by the licensing committee at the HFEA.

Here is a link to the survey:

Many thanks


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