Preventing Mitochondrial Disease

Your voice is vital

The HFEA (who are the Government's independent regulator overseeing assisted reproductive technologies) in conjunction with Genetics Alliance, have asked for input from Lily patients who have mitochondrial diseases affecting more than one complex of the respiratory chain. These conditions are also known as 'combined oxidative phosphorylation deficiencies'.

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

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

There are 32 questions in total but you are only asked to respond to those relevant to you so we estimate the questionnaire will take between 10 and 30 mins depending on how much detail you provide.

The deadline for responses is Mon 28th Jan 2019.

For more information, or to complete the survey, please follow the link: