‍Sanius Health Announces Top 80 people who will drive true innovation and momentum in Sickle Cell Disease Care, Development and Social Impact. Taking in votes from across the globe, Sanius Health has worked with an expert judging panel to celebrate innovators in SCD. The organisation, which has developed a patient-centric ecosystem for SCD, tapped industry experts, advocates and organisations to shortlist pioneers in every sector.

Together, the Sanius Health team worked with the global SCD community to feature the brightest minds in Care, Development and Social Impact. Each nomination was evaluated by patients and clinicians connected to Sanius Health’s ecosystem; not on the basis of size and scale, but with an eye on relevance, impact, leadership and success in making meaningful change for SCD patients.

Regarding the publication of the Top 80 Most Influential Advocates and People in Sickle Cell Disease, Sanius Health’s CEO and Founder Orlando Agrippa says:

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‘For decades, the Sickle Cell Disease community has encountered set back after setback in producing true innovation for patients. However, thanks to the efforts, commitment and advocacy of certain individuals, we are finally seeing things change for SCD.

From research pioneers to cultural icons, each person on the Top 80 has left a profound impact on driving treatments, care and patient welfare forward.On behalf of the team and the entire patient community, we are grateful for the amazing work each person on the Top 80 is doing to better patient lives.'

Sanius Health is focused on addressing the range of evolving needs of the SCD community. This includes advocating for greater commitment to addressing health inequalities, expanding access to resources and care provision disparities towards SCD patients. By publishing the Top 80 Most Influential Advocates and People in Sickle Cell Disease, Sanius Health hopes to shed light on these issues – as well as the people who are working to address them.

Some of this year’s Top 80 Most Influential Advocates and People in SCD:

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Dr. Ify Osunkwo, Chief Patient Officer, Forma Therapeutics (United States)

Dr Ify is a world-renowned thought leader in Sickle Cell Disease and haemoglobinopathies. Her passion for dismantling health inequities for patients of all disease types drive her aim to compare and identify efficacies in improving health equity for diverse patient groups.

Across clinical management, academic and research settings, her 25+ years of experience working has led her to drive true improvements in the lives of many SCD patients. AsChief Patient Officer for Forma Therapeutics and founder of Atrium Health’s SCD Sickle Cell Disease Enterprise, she has overseen health provision for over 1400+ adults and 400+ children with SCD.

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‍A-Star, Recording Artist (United Kingdom)

A-Star, UK-based rapper, has used his platform talents to share his experiences with SCD. His music reveals some of his most vulnerable and excruciating moments, bringing to light the hidden and often neglected realities of SCD. It is because of his bravery in doing so that he has begun the process of breaking down cultural barriers around the condition. A-Star has penned songs that not only speak to his own SCD journey, but also encourage awareness on the disease. In partnership with the NHS, he released “Hidden Pain” to encourage people to donate – especially to save the lives of patients with SCD. ‍

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Aisatu Beadford-King, Founder Africa Sickle Aid (United Kingdom)

Aisatu was born in Liberia and moved to the UK when she was 3 years old. Her diagnosis inspired her motivation to educate patients and the wider public on the condition, and the importance of bettering screening and care resources, genetic disease and education around the disease. Through founding her organisation AfricaSickle Aid, Aisatu is closing SCD knowledge gaps in the UK – especially around early testing and pain management. ‍

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Elvie Ingoli, President – German Sickle Cell and Thalassaemia Association (Germany)

As an SCD and osteo-sarcoma survivor, Elvie has used her experience as a patient and advocate the German Sickle Cell Disease and Thalassaemia Association. Her work involves working with EU-wide policy makers, research organisations and SCD representatives to help thousands of patients all over the country to gain better access to care. She hopes, that by working with other patient organisations in Europe and beyond, that she can protect the welfare and well-being of future generations. ‍

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Lea Kilenga Masamo-Bey, Founder and Director – Africa Sickle CellOrganisation (Kenya)

Lea is the founder and CEO of Africa Sickle Cell Organization, an organisation that envisions a world free from sickle cell suffering - no matter where you live. Fuelled by her own experience as a patient, she is a passionate advocate for the control of Sickle Cell Disease in Kenya, across sub-Saharan Africa and beyond. Her 10+years of experience in SCD advocacy have been spent solving sickle cell problems in rural, resource poor communities in sub-Saharan Africa. Lea has worked with individuals in multiple communities overcome health, racial, economic and gender inequities that lead to premature and unnecessary death and disability.

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Dr. Sanne Lughthart, Clinician – University Hospitals Bristol and Weston, NHS FT (United Kingdom)

As a specialist and advocate for SCD, Sanne believes that true advancement for the condition can only be achieved through collaboration and evidence-based innovation. As such, she is passionate about research into new treatments and technologies that hold promise in betteringSCD lives. She is currently a consultant Haematologist at University HospitalsBristol NHS FT and the Haematology Coordinator Centre lead for the South-West of England. Over the course of her career, Sanne has worked all over Europe –including the United Kingdom, the Netherlands and Germany.

Dr. Kofi Anie, Clinician and Psychology Lead– London North West University Healthcare NHS Trust (United Kingdom)

Dr Kofi Anie is one of the most recognisable figures in SCD care across the UK. His professional aspiration is owed to a lifelong personal and family experience of sickle cell disease. He was awarded an MBE for Services to People with Sickle Cell Disease and Thalassaemia in the 2017 Queen’s Birthday Honours. He is currently a clinician and Psychology Service Lead for children and adults with sickle cell disease and thalassaemia at London North West University Healthcare NHS Trust, and an Honorary Clinical Senior Lecturer at Imperial College London. On a national level, Dr Anie has been involved in the development of SCD clinical guidelines and care standards. He was a member of the Expert Working Party for the National Haemoglobinopathies Project, and the National Institute for Health and Care Excellence (NICE) Guideline Development Group – “Sickle Cell AcutePain Episode”.

Sekayi Tangayi, Lead Sickle Cell and Thalassaemia Nurse – East London NHS FT (United Kingdom)

Sekayi Tangayi’s career is a leading and award-winning SCD nurse across the UK. Her clinical expertise has been applied across multiple nation-wide success with unprecedented success. Due to her depth of experience, government bodies such as the Department of health, have relied on her guidance to build better SCD care. She participated in the AllParty Parliamentary Group, alongside  Labour MP Diana Abbott, to review SCD standards of care. Currently, she is a decorated member of the Royal College of Nursing Network for Haematology, and nurse advisor to theUK Commissioning board. For her decades-long dedication to bettering patient lives, Sekayi was awarded the Queen’s birthday honours for her work in SCD nursing.  

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Click here to see Sanius Health’s Full Top 80 Most Influential Advocates andPeople in Sickle Cell Disease

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About Sanius Health

Sanius Health is an AI-powered patient-generated data platform with a focus on accelerating personalised medicine, drug discovery and clinical research for cancer treatment, haematological malignancies, haematological disorders and rare diseases. We are the largest Sickle Cell Disease Integrated patient ecosystem, and are expanding this to include other conditions. We partner with passionate patients, treatment centres, researchers, developers of therapeutics and regulators in advancing outcomes for patients through our health data platform.