Reproductive Advice Service for families affected by mitochondrial disease

We understand that thinking about starting or growing a family can bring up a lot of questions, especially if you or your partner are affected by mitochondrial disease. That’s why we’re delighted to share details of a specialist clinic that’s been set up in Newcastle to offer personalised advice and support around reproductive options for affected families.

What is the Mitochondrial Reproductive Advice Clinic?

The Mitochondrial Reproductive Advice Clinic (MRA-C) offers free, practical support and advice for women with known mitochondrial DNA (mtDNA) variants and their partners, from anywhere across the UK. It’s run by Sister Catherine Feeney, Nurse Consultant, at the Royal Victoria Infirmary in Newcastle.

The aim of the clinic is to help families understand the options available to them, and to support informed decisions around starting a family – whether that includes natural conception, assisted reproductive techniques like preimplantation genetic testing (PGT), mitochondrial donation and egg donation or other routes such as adoption or choosing not to have children.

How does the service work?

Once a referral is made, couples will be invited to attend two co-ordinated appointments in Newcastle, usually on the same day to reduce travel burden wherever possible:

• Mitochondrial Reproductive Advice Clinic (MRA-C): This initial appointment provides time to discuss reproductive choices, review your genetic diagnosis and assess how pregnancy might affect your health if you live with a mitochondrial disease diagnosis.
• Mitochondrial Assisted Reproductive Technologies Clinic (MART-C): This clinic is based at the Newcastle Fertility Centre at Life, with input from Professor Robert McFarland (mitochondrial disease specialist). It involves more detailed fertility assessments for both partners and a chance to explore possible treatments, like PGT or mitochondrial donation, in more depth with an expert team.

The clinics are set up to provide support throughout the treatment process, including one routine session with a fertility counsellor for patients undergoing mitochondrial donation, followed by access to the service on an ‘as required’ basis.

A dedicated nursing contact is also available for questions and support throughout the process.

Who can be referred?

This service is available for women who carry a known inherited change in their mitochondrial DNA that can cause disease. Each referral is reviewed by a team of mitochondrial and fertility specialists to ensure this clinic is right for you.

Please note: in line with NHS funding guidelines and current clinical practice, there are age limits for certain reproductive techniques. Women must usually be under 40 to be eligible for PGT, and under 35 to access mitochondrial donation. These limits are based on medical factors such as fertility and the safety and success of treatment. If you’re unsure whether this might apply to you, your clinician can talk you through your options and next steps.

How can I access this service?

If you’re interested in accessing this service, please contact your own clinician to discuss the possibility of a referral to the Newcastle Mitochondrial Reproductive Advice Clinic.

General enquiries about the service can be made via Jane Brown. Please either email [email protected] or call 0191 282 4876.

If you’re considering your family’s future and would like support in understanding your reproductive options, you’re not alone. This service is here to help you explore what’s possible, and to support you every step of the way.