Your guide to the rare disease research ecosystem in the UK Raremap has been created to help you find out more about the organisations in the UK rare disease ecosystem, what they do and how they interact with each other. Categories of organisations, groups and networks There are many different groups and organisations all involved […]

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This episode of the https://www.spreaker.com/show/progress-educational-trust-podcast discusses the genetics and genomics of various forms of donor conception, and related scientific and ethical issues. The discussion – which originally took place at the PET Annual Conference – is introduced by Sarah Norcross (Director of PET) and chaired by Professor Karen Sermon (former Chair of the European Society of Human Reproduction and Embryology), with contributions from: ⚫ Professor Stéphane Viville (founder of the Genetics of Infertility Unit at the University Hospitals of Strasbourg) ⚫ Professor Dagan Wells (Professor of Reproductive Genetics at the University of Oxford and Director of Juno Genetics) ⚫ Professor Michael Parker (Director of the Ethox Centre and of the Global Health Bioethics Network) ⚫ Debbie Kennett (Genetic Genealogist) PET is grateful to the European Society of Human Reproduction and Embryology for supporting this discussion. PET is also grateful to Jon Nicoll, who created the opening and closing music for its podcast. Register at https://www.progress.org.uk/events/upcoming-events/ for upcoming PET events.

This episode of the https://www.spreaker.com/show/progress-educational-trust-podcast discusses the use of mitochondrial donation to avoid mitochondrial disease, with speakers including two of the pioneers whose work has resulted in the https://www.progress.org.uk/healthy-children-born-after-mitochondrial-donation-in-the-uk/. The discussion is chaired by Sarah Norcross (Director of PET), with contributions from: ⚫ Professor Mary Herbert (pioneer of mitochondrial donation, and lead author of the https://doi.org/10.1056/NEJMoa2415539 reporting embryological and reproductive aspects of the use of mitochondrial donation in treatment in the UK) ⚫ Professor Sir Doug Turnbull (pioneer of mitochondrial donation, and lead author of the https://doi.org/10.1056/NEJMoa2503658 reporting maternal and child health outcomes following the use of mitochondrial donation treatment in the UK) ⚫ Liz Curtis (established the https://www.thelilyfoundation.org.uk/ after losing her daughter to mitochondrial disease) ⚫ Professor Catherine Mills (Patient and Community Engagement Lead at the https://www.monash.edu/medicine/mitohope pilot programme for mitochondrial donation in Australia) At least eight children with donated mitochondria have been https://www.progress.org.uk/healthy-children-born-after-mitochondrial-donation-in-the-uk/. All of the children are https://doi.org/10.1056/NEJMoa2503658 to have made normal developmental progress, and none of them show any sign of mitochondrial disease. The https://www.ncl.ac.uk/press/articles/latest/2025/07/mitochondrialdonationtreatment/ of this news came 10 years after a successful campaign – by PET, the Lily Foundation and others – to https://www.legislation.gov.uk/uksi/2015/572/contents/made, in order to permit the use of mitochondrial donation to avoid transmission of mitochondrial disease from mother to child. A similarly successful campaign in Australia has led to the https://www.legislation.gov.au/C2022A00026/latest/text of Maeve's Law, named in honour of a young Australian girl who has mitochondrial disease. As in the UK, the Australian legislation permits the carefully regulated use of mitochondrial donation in treatment. In this podcast pioneers, experts and advocates at the forefront of mitochondrial donation explain what has been achieved to date, and discuss what should happen next. PET is grateful to the Adelphi Genetics Forum, the British Fertility Society, CooperSurgical and the Senior Infertility Nurse Group for supporting this discussion. PET is also grateful to Jon Nicoll, who created the opening and closing music for its podcast. Register at https://www.progress.org.uk/events/upcoming-events/ for upcoming PET events.