Featured news
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Empowering nurses and midwives: Spinal Muscular Atrophy session
Join us on 30 September for an online webinar which will give you the tools to improve care for people with Spinal Muscular Atrophy, also known as SMA.
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Norfolk service identifying people at highest risk of cardiovascular disease shortlisted for patient care award
Our Familial Hypercholesterolaemia (FH) service, based at NNUH, has been shortlisted for a Picker Experience Network Award, in the category of 'Commissioning for Better Experience of Care'.
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Baby's ALD gene discovery through genome sequencing leads to diagnosis for older brother
A baby whose rare genetic change was picked up by a major research study has helped diagnose the same change in his older brother - allowing vital early monitoring of both for a potentially life-limiting rare condition.
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"Participating in gut research found my womb cancer early"
Victoria, a member of our patient panel, shares the story of how taking part in IBD research saved her from womb cancer.
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Over 17,000 babies have been recruited into the Generation study in our region
Across the East region (East Midlands and East of England), participating hospital Trusts have recruited over 17,000 babies and families into the Generation Study as of this month.
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We're supporting BBC Radio Derby's Inherited Cancer Campaign
BBC Radio Derby are running their 'It Starts With You' awareness campaign focused on hereditary and genetic cancers, encouraging families to discuss medical histories, understand risks regarding mutations like BRCA and Lynch syndrome.
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Registration open for ‘Understanding and using the Sickle Cell Clinical Pathway Initiative (CPI)’ webinar
The webinar 'Understanding and using the Sickle Cell Clinical Pathway Initiative (CPI)' will take place on Thursday 21 May 2026 at 11am.
University Hospitals of Leicester national Fragile X Syndrome holistic hub
Co-led by Professor Julian Barwell alongside Chris and Alex McQuade, the University Hospitals of Leicester, in partnership with the Fragile X Society, are establishing a national holistic and integrated care hub.
Our April newsletter out now
Our latest newsletter is now available to read on our website.
Study explores role of somatic mutations in autoimmunity
Trust clinicians and colleagues have shown that accumulated genetic changes could contribute to autoimmunity.
UK study highlights “fragile trust” in healthcare among Black communities
A major UK report has found that trust in healthcare and clinical research among Black communities is strong at a personal level but remains fragile overall, shaped by inequality, past experiences and inconsistent care.
Guidance on blood cancer genetic testing updated following national consensus meeting
Updated guidance follows a 2025 consensus meeting between clinicians, clinical genetics and genomic labs.
Our Generation Study Results Coordinator leads on new infographic for Health Visitors
The Institute of Health Visiting (IHV) are working with Genomics England to support health visitors’ awareness of the Generation Study – a research study run in partnership with NHS England that is testing newborn babies for more than 200 genetic conditions.
Genomic study helps detect baby’s rare growth condition
Baby Safi started treatment for a rare growth condition after participating in the Generation Study, a national genomic screening study
Rare Disease Day (28 Feb) is nearly here
Rare Disease Day is a globally coordinated movement dedicated to rare diseases, striving for equity in social opportunities, healthcare, and access to diagnosis and therapies for people living with a rare disease.
Genomics Primer4Pharmacy course
We have an exciting opportunity for those working in pharmacy in the East Genomics region (East Midlands and East of England) to attend a one day Genomics Primer4Pharmacy course.
Public and patient involvement opportunities
Here are details of a couple of great opportunities for patients and the public in the East Midlands and East of England to get involved and help shape decisions about genomics in our region.
National Cancer Plan launched
The National Cancer Plan, launched on 4 February 2026, sets out England’s next major phase of change to improve cancer outcomes over the coming decade.
Leukaemia testing in Leicester helps patients to access tailored treatments
By offering IDH1 testing in AML, the lab are helping people to access targeted treatments sooner
Regional Network for Nurses - Red Cell Conditions
Join us on Wednesday 25 February 2026 to hear Sophie Briggs, Haematology CNS Red Cell Services, NNUH give an overview of red cell conditions and introduce a new red cell service.
Thousands at risk of inherited cancers to receive regular NHS checks through world-first genetics programme
Thousands of people at higher risk of developing cancer due to inherited faulty genes will be regularly checked and tracked by the NHS thanks to a first-of-its-kind national genetics programme.
Join our national Lunch & Learn series
Genomics is transforming healthcare - and it’s no longer a niche subject. From diagnosis to personalised treatment, genomic knowledge is becoming essential across all clinical roles.
Study finds 7% of cancer patients carry genetic variants that increase chemotherapy risk — but access to testing appears equal
A new real‑world study from Nottingham University Hospitals has found that around 7% of cancer patients carry DPYD gene variants that can make standard chemotherapy drugs significantly more toxic. These drugs - including 5‑fluorouracil (5‑FU) and capecitabine - are widely used to treat cancers such as colorectal, breast, and pancreatic cancer.
Genomic newborn screening open to families at Nottingham University Hospitals
Parents of babies born at NUH will now be offered screening to look for over 200 rare conditions through the Generation Study.
International spotlight on the NHS England National Lynch Syndrome Transformation Project
A report on the national Lynch Syndrome Transformation Project has recently been published by the International Journal of Cancer.
Regional Midwives in Genetics and Genomics Network (RegMiGGs.net) - January 2026
RegMiGGs.net brings together regional midwifery professionals, educators and those in specialist roles that support the embedding of genomics in maternity services.