10th Annual Sickle Cell and Thalassemia Conference (ASCAT) in London

5th - 7th October 2016


This annual conference is now in its 10th year and is well established as one of the leading events in the world, providing an international forum for dialogue and interaction between the leading experts in sickle cell disease (SCD) and thalassaemia and health care professionals at the front line of care.

The Conference is hosted by Evelina London Children’s Hospital, Guy’s and St Thomas’ NHS Foundation Trust.


The passion and science were the strongest in this meeting. It was an extremely pleasant experience.
— Kalpna Gupta

Day 1

Overview of Sickle Cell Disease
Understanding and improving patient experiences: transition, pain, and treatment adherence
Chronic organ damage session on the pulmonary, bone, renal and neurologic systems
Basic and Translational Research in Sickle Cell Disease – US Centers of Excellence in Hemoglobinopathy Research
Neuro-imaging Diagnostic and case studies

Photos taken by Kois Miah - Kois Miah Photography


The organization was excellent and the venue beautiful.
I hope that new collaborations will be forged as a result of our interaction.
I know I have already been in touch with three of the speakers!
— Caterina P. Minniti

Day 2

Europe and the Middle East: challenges and opportunities in the migration era
Priorities for sickle cell disease in Africa and India
Main themes in Thalassaemia

Photos taken by Kois Miah - Kois Miah Photography


It was useful to get an overview of the disease, and how it affects our adolescents as they transition into adult services. We listened to some extremely powerful testimonies from patients, who shared their first hand experiences of living with the disease.
— Daniella Adams

Day 3

Genetics and genomics for haemoglobinopathies
Haemoglobinopathy morphology and clinical case scenarios
New drug therapies
Nursing issues in haemoglobinopathies

Photos taken by Carmen Valino - Kois Miah Photography


It was a pleasure to present at the conference and Safiyyah and Kerry really valued the opportunity to speak and share about their experiences. They enjoyed hearing the positive comments from attendees after the their talk.
— Caron Lawson
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Strengthening Health Systems in Nigeria

3-5th May 2016, Abuja

The SCORE 2016 Conference was hosted and facilitated by Setraco Nigeria Ltd.

The audience included government representatives, including special guest of honour, Her Excellency, Mrs Aisha Buhari, wife of the President of Federal Republic of Nigeria represented by Mrs Amina Bello wife of Niger State Governor; the Ministry of Health; industry and NGO representatives as well as a breadth of specialist sickle health care workers. There were also a number of sickle cell patients present.

During the course of the two days, speakers, both local and international covered a variety of SCD-related subjects and issues. These discussions included recent advances in bone marrow transplant to the use of Hydroxycarbamide in managing the condition from an economically challenged environment. Topics also covered were the difficulties and success stories in setting up a transfusion service. The local teams then presented the delivery of health education to more remote communities and the challenges faced by community health care teams. 

Hadiza Buhari was appointed SCORE Ambassador 2016 and Mrs Fatima Shema, wife of the former governor of Katsina, received the Recognition Award 2016. 

Mrs Aisha Buhari founder of Future Assured Project in support of sickle cell management in Nigeria. In attendance Prof Baba Inusa, Vice-Chair Sickle Cell Cohort Research - SCORE ; led by Prof Abdullahi Abba, ABU Zaria

Our History: A Request for Partnership

December 2005

When I visited my home, I went to pay the usual homage to aunties, uncles and all the important relatives. This is important for me; it sustains my roots to the land of my birth and the connection to where I belong. My mother expects me to do the full rounds so that she is not blamed for monopolising her son.

This visit unlike all others would become a turning point for me.
— Dr Baba Inusa

I saw a 12- year-old cousin who was pale and suffering bouts of pain. I was told she would miss school and because of this; quite often unable to complete her school assignment. The family was not sure what evil spirits were tormenting her. As I walked into the room she was in severe agony complaining of pain all over the body, jaundiced and pale. She was literally dying of severe anaemia (low haemoglobin), was jaundiced and had swollen limbs.

My cousin has sickle cell disease (SCD) and was experiencing one of several severe vasoocclusive (bony) crisis and haemolysis (red cell destruction).


The Burden of Disease

  • SCD is an inherited blood disorder that requires two copies to show the full illness and a single copy from either parent is called a carrier stage.
  • The carrier stage offers protection against malaria and a survival advantage. Africa has the highest prevalence of the disorder with over 75% of the world’s patients living in Sub-Saharan Africa.
  • In Nigerians, 1 in 4 of the population carries the gene and 1 in 100 have the full illness and that would make it at least 1.5million with SCD.

However, just like my cousin a large number of families are unaware of their status or have the wrong result; others have no idea where to seek help or advice. The majority of diagnoses occur when the child falls sick. In addition, some may die not knowing this was the reason and thus attribute evil spirits to the family instead. The technology to make diagnosis form birth is now standard practice in the western world including Brazil but no single African country has implemented a full scale newborn screening (diagnosis at birth).

Nigeria does not have newborn screening even though this is one of the most effective ways of educating families, empowering mothers to take care of their children and teach patients self-care. The introduction of Newborn screening has been shown to increase patient survival, as well as improved the overall quality of life.


First Steps

In 2009, we secured an EC-UNDP grant (N-253) to establish a pilot project by instituting newborn SCD screening from birth using new technology referred to as High Performance Liquid Chromatography (HPLC). This has now been established in Abuja.

With the support of international community and universities in the UK and US, through Nigerian Diaspora; additional equipment has been donated to Kaduna, Katsina, Oyo and Anambra states.

The initial programme has built a team of specialists’ counsellors including doctors; nurses and technologists have received training at the national sickle cell centre, Lagos.


The Challenge

The need for funding to continue the screening programme such as un-interrupted supply of reagents, capacity building, training of lab staff and other health professionals, capacity to sustain community mobilisation, counselling and patient follow up. There is a need to enhance the knowledge base not only in specialists’ centres but also in secondary and primary care centres and support the professional development education and training of community extension workers. The Way forward We are therefore proposing to continue this work by building on the expertise and contacts achieved through this project. Our aim is to develop a robust programme that is capable of leading to a national policy on newborn sickle cell screening that is adopted by state governments and has the support of the private sector and well meaning Nigerians. The Proposal Our organisation, Collaboration for Health Advancement, Innovation and Research (CHAIR) is a group of Diaspora professionals working with delivery partners in Nigeria on health related initiatives. Our respective organisations abroad support the work and contribute the expertise of some colleagues to our projects including institutional financial and material support. 

Words by Dr Baba Inusa