Preventing Mitochondrial Disease

Your voice is vital

The HFEA (who are the Government's independent regulator overseeing assisted reproductive technologies), in conjunction with Genetic Alliance, have asked for input from Lily patients/families who have a mitochondrial disease called Mitochondrial short-chain enoyl-CoA hydratase-1 deficiency or ECHS1D.

The HFEA would like to better understand the impact of this condition before deciding whether to licence a reproductive technique called PGD (preimplementation genetic diagnosis). This would allow couples who carry this mitochondrial disease to use the technology to help them have a child free from mitochondrial disease.  

Your contribution to this consultation is invaluable and could change the lives of other affected families by ensuring they have better reproductive choices for the future.

There are 16 questions in total but you are only asked to respond to those that are relevant to you.

The deadline for responses is Tuesday 1st October 2019.

For more information, or to complete the survey, please follow the link: https://www.surveymonkey.co.uk/r/JKLYWZL