Elements and advances in Sickle Cell Care

A 2-day virtual conference


Pioneer in Fetal Medicine

Professor Kypros Nicolaides

Pioneer in Fetal Medicine

Professor Kypros Nicolaides is one of the pioneers of fetal surgery and his discoveries have revolutionised the field

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Professor Eugene Oteng-Ntim

Consultant Obstetrician, specialist in maternity care for women with sickle cell.

Professor Eugene Oteng-Ntim is a consultant obstetrician who specialises in caring for pregnant women with sickle cell and co-runs the monthly joint sickle cell clinic at Guy’s and St Thomas’ NHS Foundation Trust. Eugene also wrote the RCOG guideline ‘Management of Sickle Cell Disease in Pregnancy’, and more recently, ‘Management of sickle cell disease in pregnancy. A British Society for Haematology Guideline’ (2021).
In 2003, Eugene was awarded GlaxoSmithKline fellow by the Royal Society of Medicine (RSM) and in 2007 became president of the maternity and newborn section at RSM. Eugene is a fellow of Royal College of Obstetricians and Gynaecologists (RCOG). He was admitted as a member of RCOG in 1997 and a fellow in 2009.

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Mrs Nkechi Anyanwu

Service lead- Sickle Cell & Thalassaemia Team

I am the Community Matron and Clinical Lead for The South East London Community Sickle & Thalassaemia services, for Evelina London (Guy’s and St Thomas’ NHS Trust) covering the boroughs of Lambeth, Southwark, Lewisham and Greenwich & Bexley.
I am currently the Chair for Sickle Cell and Thalassaemia Association of Nurses, Midwives and Allied Professionals ( STANMAP); and the co-lead for Nursing in the South Thames Sickle Cell & Thalassaemia Network ( STSTN)

I have worked with clients, families and carers with Sickle Cell and Thalassaemia, since 1998 as a haemoglobinopathy nurse counsellor and I have a wide range of experiences in the field.

My role includes providing management, professional and clinical leadership to a team of skilled specialist haemoglobinopathy nurses, in the delivery of high-quality integrated community based, nursing service. We increase patients coping strategies in the community which helps to reduce their hospital admission rate. I advocate for clients with major haemoglobinopathies and strive to raise awareness amongst our local population.

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Professor Josu De La Fuente

Consultant Paediatric Consultant, bone marrow transplant specialist

Josu de la Fuente is a Consultant Haematologist at Imperial College Healthcare NHS Trust and Professor of Practice (Cellular and Gene Therapies) of Imperial College London. He was appointed Director of the Paediatric Blood & Marrow Transplant Programme in 2006, specialising in transplantation for haemoglobinopathies and bone marrow failure, and being innovative in the use of alternative donors. He is the vice-chair of Paediatric Diseases Working Party of EBMT, a member of the steering committee of the BMT CTN 1507 trial Co-Director of the Vanderbilt Global Consortium for a Cure. He is an investigator and in the steering committee of a several gene therapy trials in sickle cell disease and thalassaemia.

After an initial period in adult medicine, Professor de la Fuente completed his general training in paediatrics in different hospitals in London and following membership of the Royal College of Paediatrics and Child Health, he trained in haematology at Imperial College and Great Ormond Street Hospital achieving membership of the Royal College of Pathologists. During this time, he developed an interest in red cell disorders, bone marrow failure and transplantation, including a period of basic research in human developmental haemopoiesis as an MRC Clinical Research Fellow leading to a PhD. He has also developed a unique clinical and research programme for Diamond Blackfan anaemia patients.

My main interests include novel therapies, in particular targeted, cellular and gene therapies and ensuring the needs of rare anaemias are represented, with particular attention to Diamond Blackfan anaemia.

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Mr Tarek El-Toukhy

Consultant in reproductive medicine and pre-implantation genetic diagnosis

Tarek El-Toukhy is a consultant in reproductive medicine and pre-implantation genetic diagnosis (PGD) at Guy’s and St. Thomas’ Hospital NHS Foundation Trust and honorary senior lecturer at King’s College London.
He is based clinically at the Assisted Conception Unit at Guy’s Hospital in London.
Tarek graduated in 1991 (Hons), obtained his MSc degree in obstetrics and gynaecology in 1996 and MD degree and MRCOG in 1998.

His clinical interests include:

  • in-vitro fertilisation (IVF) techniques
  • recurrent IVF implantation failure
  • prevention of ovarian hyperstimulation syndrome (OHSS)
  • pre-implantation genetic diagnosis (PGD)
    minimal access surgery.

His research interests cover various aspects of assisted conception and pre-implantation genetic diagnosis. He has published over 100 original articles, reviews and opinion papers. He has also published a book on PGD and is a scientific editor for BJOG: an International Journal of Obstetrics and Gynaecology. He peer-reviews for a number of medical journals including the BMJ and Human Reproduction.

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Professor Jo Howard

Consultant Haematologist, sickle cell lead

Jo Howard is a consultant at Guy’s and St Thomas’ NHS Foundation Trust and is head of the sickle cell service.  Jo receives referrals for patients with complications of sickle cell disease from all over the UK. She has lectured on sickle cell disease at national conferences, including the British Society of Haematology, Royal College of Pathology, Royal College of Obstetrics and Gynaecology and British Thoracic Society.

She is involved in several research projects in sickle cell disease and has published in this area.  Jo is on the steering committees for the UK Forum for Haemoglobin Disorders, the National Haemoglobinpathy Registry and the British Committee for Standards in Haematology (General Haematology) and is the lead for Adult Peer Review for haemoglobinopathies. Jo also co-wrote the RCOG guideline ‘Management of Sickle Cell Disease in Pregnancy’, and the recent guideline ‘Management of sickle cell disease in pregnancy. A British Society for Haematology Guideline’ (2021).

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Professor Baba Inusa

Lead consultant for paediatric haemoglobinopathies

Prof Baba Inusa graduated MBBS 1984, ABU Zaria, Nigeria. He is a professor of paediatric haematology and sickle cell disease, King’s College London and lead consultant paediatric haemoglobinopathies at Evelina London.  He is the Chair of the National Haemoglobinopathy Panel, England and co-lead Haemoglobinopathy Coordinating Centre, South London, South East Network and a trustee of the UK Forum on Haemoglobin Disorders. He is also a mentor, supervising PhD and masters students at King’s College London, receiving students from Italy, China and the Middle East.  His main research activity and interest is in sickle cell disease with over 70 publications in high impact journals focusing on global health, newborn screening, stroke, renal disorders and health related quality of life. He is a reviewer for peer review journals, national and international publications and grant funders. Baba is the Chief Investigator of ‘African Research Innovative Initiative for Sickle Cell Education’ (ARISE), an EU Horizon 2020 Marie Sklowdowska – Curie $2.1m grant (2019-2023) involving institutions in Europe (UK, France, Italy and Cyprus), USA, Africa (Kenya and Nigeria) and Lebanon. He is the founder and director of the Academy for Sickle Cell and Thalassaemia Conference (ASCAT), an international meeting platform that is now in its 15th year (2020), supported by Sickle Cohort Research Foundation (SCORE) www.scorecharity.com

John James OBE

Sickle Cell Society CEO

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Patient and Public Involvement (PPI) member Jeannine Joseph

Sickle cell patient & representative for research

I’m Jeannine Joseph and I am a patient under Guys and St Thomas Hospital Sickle Cell team. I’ve been an active member of the sickle cell community since I was 15, advocating and teaching others about this disease. I am also a patient expert at the hospital and continually work closely with the sickle team there. I am really interested about the future applications for the TAPS2 trial and whether it can help improve the outcomes for sickle women during pregnancy and the positive effects it may have on their babies. I’m on the research panels hoping to make them more accessible to women and also to help the researchers to see the trial through the eyes of a patient


Dr Rachel Kesse-Adu

Consultant Haematologist, sickle cell specialist

Dr Rachel Kesse-Adu has been a consultant haematology at Guy’s and St Thomas’ NHS Foundation Trust since 2012 and specialises in sickle cell care.  Rachel’s research interests focus on the cardiovascular and urological complications of sickle cell anaemia. She is interested in postgraduate education and is the training program director for haematology specialist trainees on the London South Central rotation. She is one of the network leads for the south thames sickle cell and thalassaemia network (STSTN) and chair of the guideline writing group. She is clinical lead for the haemochromatosis service.

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Dr Julia Kopeika

Consultant gynaecologist, subspecialist in reproductive medicine and surgery

Julia (Yuliya) Kopeika is a consultant gynaecologist and subspecialist in reproductive medicine and surgery at Guy’s and St Thomas’ NHS Foundation Trust, where she is the lead clinician for the oncology fertility service at Guy’s, which provides fertility preservation to patients of reproductive age who require chemotherapy or radiotherapy. Julia achieved a PhD in reproductive biology and cryobiology at the University of Bedford, in collaboration with the Wellcome Trust Genome Campus. She completed the Royal College of Obstetricians and Gynaecologists (RCOG) accredited subspecialty in reproductive medicine and surgery at Guy’s and St Thomas’ NHS Foundation Trust. Julia is an active researcher in reproductive medicine. Her research on freezing sperm, eggs and embryos has been awarded by various international scientific societies.


Professor Dame Elizabeth Nneka Anionwu

1st ever UK Sickle Cell & Thalassaemia Nurse & author of numerous titles, including her memoir ' Dreams from my Mother'.

Professor Dame Elizabeth Anionwu helped to establish in Brent the first nurse-led UK Sickle & Thalassaemia Screening and Counselling Centre in 1979. In 1988, she was awarded a PhD from the Institute of Education, University College London (UCL). From 1990-1997 she worked at the Institute of Child Health, UCL as a Lecturer then Senior Lecturer in Community Genetic Counselling. She has written extensively and is a co-author with Professor Karl Atkin of the book ‘The Politics of Sickle Cell & Thalassaemia’ published in 2001 by the Open University Press. Elizabeth was honoured with a Damehood (DBE) in the 2017 Queen’s New Year’s Honours List for her services to nursing and the Mary Seacole Statue Appeal. The Queen’s Nursing Institute awarded her a Fellowship (FQNI) in October 2017. In 2001 she was awarded a CBE for services to nursing. In 2004 she was presented with the Royal College of Nursing Fellowship (FRCN) for her work in the development of nurse-led sickle cell and thalassaemia counselling services and education and leadership in transcultural nursing. In July 2018, as part of the celebrations for the 70th Anniversary of the National Health Service, Elizabeth was included in the list of the 70 most influential nurses and midwives in the history of the NHS. She is a Patron of the Sickle Cell Society, the Nigerian Nurses Charitable Association (UK) and the Sickle & Thalassaemia Association of Nurses, Midwives & Associated Professionals (STANMAP). She chaired several projects for the NHS Sickle and Thalassaemia Screening Programme. These included: the development of ‘Caring for people with sickle cell disease and thalassaemia syndromes: A framework for nursing staff’ that was accredited in 2010 by the Royal College of Nursing ‘Understanding the contribution of sickle cell and thalassaemia specialist nurses’ (2012), funded through a grant from the Roald Dahl’s Marvellous Children’s Charity. Elizabeth has also authored several books, most recently ‘Dream from My Mother, out now at http://www.smarturl.it/DreamsFromMyMother

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Specialist Nurse Kelly Nwankiti

Lead Nurse for Patient Blood Management

Kelly Nwankiti is the Lead Nurse for Transfusion and Patient Blood Management at King’s College Hospital.
Kelly has worked in various nursing roles within haematology for 14 years, specialising in bone marrow transplantation, sickle cell and thalassaemia, the anaemias and transfusion medicine.
Kelly is also the Chair of the London Platelet action group for NHS Blood and Transplant and works closely with action groups within trauma medicine, platelet usage and transfusion in red cell medicine.

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Dr Nita Prasannan

Consultant Haematologist - special interest in sickle cell care in pregnancy

Dr Nita Prasannan is a general haematology consultant with a special interest in sickle cell disease in pregnancy and is a principal member of the joint sickle cell clinic, held monthly at Guy’s and St Thomas’ Hospital in the antenatal clinic. Here, she provides expert care, alongside the other member of the joint clinic, to ensure that pregnant women with sickle cell receive holistic, individualised, joined up care with a complete overview of all aspects of their health needs, both sickle and maternity related.

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Research Leads for TAPS2 – Hilary Thompson (RN/RM) & Vicky Robinson (RM)

Hilary Thompson is a midwife and also the lead nurse for the TAPS2 study, along with lead research midwife, Vicky Robinson, both based at Guy’s and St Thomas’ NHS Foundation Trust. The TAPS2 trial is a feasibility trial led by Professor Eugene Oteng-Ntim and is currently hosted in 6 sites, looking at whether pregnant women who have sickle cell are willing to participate in a randomised controlled trial which, compares serial prophylactic exchange blood transfusion with standard care. TAPS2 also has a qualitative sub study, which is exploring the opinions of the trial from both the women’s and staff perspective.

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Dr Panicos Shangaris

Clinical lecturer, subspecialising in Maternal & Fetal Medicine

Dr Panicos Shangaris is a Clinical Lecturer, subspecialising in Maternal & Fetal Medicine at KCL. He studied for a PhD at UCL funded by a Wellcome Trust SPARKS Research Training Fellowship and UCLH Charities on the subject: “Can we treat genetic blood disorders by transplantation of stem cells /gene therapy to the fetus?” under the supervision of Professor Anna David and Professor Paolo De Coppi. He has always been interested in research, fetal medicine, and therapy. For this reason, he took a year out of clinical training to study for an MSc in Prenatal Genetics and Fetal Medicine. UCLH Charities awarded him, with an entry-level fellowship for research in 2011 to start a PhD. In 2012, he was awarded the prestigious Wellcome Trust Sparks Research Training Fellowship to continue and complete his PhD. He has been involved in teaching science and medical students during tutorials, lectures and in the clinic. In addition, he had the opportunity to supervise science students during their research projects, with all students receiving merit or distinction in their projects. He is an Associate Fellow of the Higher Education Academy (AFHEA), in recognition of his contribution to teaching. He enjoys attending, networking and presenting at international conferences and during his Ph.D., he received nine national and international awards for conference presentations. He is planning to establish a stem cell research group focusing on in utero stem cell transplantation using immunotherapy, which is the research area of his mentor, Professor Giovanna Lombardi. This is an exciting, developing area, which combines stem cell research, immunology, and prenatal reprogramming. He is keen to form new collaborations with both scientists and clinicians.

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Olushola Shoyemi

Advanced Nurse Practitioner in sickle cell care

Shola fell in love with haematology nursing from her experience as a student nurse and had been working in the haematology caring for patient with haematological disease for the past 20 years. Started working as an advanced nurse practitioner in the trust in 2019 and is working closely with our young sickle cell patients who about to transition to the adult sickle cell service, ensuring that this process is a smooth transition

Specialist interests: sickle cell disease, transition, education


The Sickle Cell Society

Team lead Midwife Jackie Rice & specialist Midwife Aisling Fisher – Tower Team

Abbie Wickham

Highly Specialist Clinical Psychologist

Abbie works within the Health Psychology Service, which provides support for patients with haematological (blood) disorders at Guy’s and St Thomas’ NHS Foundation Trust. Founded in 1997, it now serves a large population of patients with sickle cell disease (SCD).