First patient licence granted for mitochondrial donation

1 February 2018

The Lily Foundation is pleased to be able to share that the HFEA has granted the first patient licence for mitochondrial donation, an IVF technique that makes it possible for women with mitochondrial disease to have healthy babies.

The approval, granted to the Wellcome Centre for Mitochondrial Research in Newcastle, clears the way for the first licensed use of the procedure and means the UK is first country in the world to offer mitochondrial donation to patients legally.

The news is the latest positive step following years of research and campaigning to legalise mitochondrial donation, which resulted in a change to UK law in 2015.

"We are absolutely delighted with the news that the first patient licence has been granted," said Lily Foundation founder Liz Curtis. "It has been a long time coming, but now people with mitochondrial disease can dream of starting a family without the risk of this devastating condition being passed on to their children.

"The Lily Foundation would like to say a huge thank you all our supporters and families who got involved in the campaign, writing to and visiting their MPs to educate and inform them of the devastating effects of mitochondrial diseases. We really did make a difference.

This is an important day for people living with mitochondrial disease, and demonstrates the importance of patient advocacy in making such life-changing treatments available to those who need them. We've worked hard to reach this point, and we hope more patients will come forward for referral."

Mitochondrial disease is an incurable, life-limiting genetic condition that affects one baby born in the UK every day. The term refers to a range of diseases caused by faulty mitochondria, tiny cellular structures that generate over 90% of the energy we need to live.

Mitochondrial donation involves taking the DNA out of a woman’s egg that has faulty mitochondria, and transferring it to a donor egg with healthy mitochondria.

If you have been diagnosed with mitochondrial disease and would like to find out more about mitochondrial donation, including enquiring about referrals, please contact li[email protected] or your local GP.