Chief, Division of Hematology, Children’s Hospital of Philadelphia

Dr. Alexis is also Professor of Pediatrics at the University of Pennsylvania Perelman School of Medicine and holds the Elias Schwartz MD Endowed Chair in Hematology. Her research interests include hemoglobinopathies (thalassemia and sickle cell disease), and stem cell transplantation in pediatric patients, including gene therapy. Her most significant scientific contributions are clinical and translational studies to better understand and treat hemoglobinopathies, leading to landmark findings in the field. She has been a leader in multicenter collaborations and has served on regional and national on advisory committees for governmental agencies as well as non-profit organizations focused on improving healthcare access, increasing workforce diversity and reducing health disparities.

As a leader of the American Society of Hematology (ASH), including ASH President in 2018, Dr. Thompson helped to develop a comprehensive report on the current state of clinical care for SCD in an effort to identify unmet medical needs, launch a national sickle cell data collection platform and create a sickle cell learning community to improve outcomes. She is also leading efforts to implement newborn screening and early intervention efforts in sub-Saharan Africa, where the burden of SCD is profound.

Senior Manager, International Programs and Alliances American Society of Hematology

Andrew Zapfel, MPH, PMP, is a global health practitioner with expertise in community engagement, policy and advocacy, and health system strengthening. He is the Senior Manager of International Programs and Alliances at the American Society of Hematology (ASH) and oversees a broad range of global sickle cell disease (SCD) activities including the Consortium for Newborn Screening in Africa (CONSA), a demonstration study on newborn screening and early clinical interventions for SCD in sub-Saharan Africa. Before joining ASH, Andrew worked in HIV, maternal health, and human rights programs globally. He is also an adjunct professor at George Washington University teaching to future public health practitioners.

Andrew is passionate about Sickle Cell Disease because it has been a neglected disease for far too long, despite impacting millions of people around the globe. This coalition is set to change the status quo and bring broad stakeholders together to create lasting impact for persons living with Sickle Cell Disease.

On Sunday’s Andrew teaches fitness classes at a local gym in Washington, DC. He is happy to lead any stretch exercise during coalition meetings!

Scientific director, Fondation Pierre Fabre

Christophe is a pharmacist by training. He has been working in the pharmaceutical industry for more than 30 years, mainly in R&D field and in headquarter. He had the chance to launch several products on the market with the team, our goal was always to focus on add-value for patients. Christophe joined the Fondation in 2020.

Fondation Pierre Fabre has been working in the field of sickle cell disease in sub-Saharan countries for 15 years. Their aim is to run their own programmes and always supporting national partner (hospitals, medical centers, universities, leaned society, CSOs.. ) in coordination with the authorities. All their programmes follow a holistic approach to be more efficient and sustainable (pillars : awareness, Diagnosis, treating patients, training, supporting innovation and supporting health authorities) .

In his free time, Christophe likes outdoors activities.

Chief Patient Officer, Vice President, Novo Nordisk Rare Disease

Ify is a lifespan hematologist turned drug developer with over 30y clinical and research experience in hemoglobinopathies. She currently serve as CPO at Novo Nordisk leading patient and community engagement strategy for the rare disease division.

Ify’s dream as a 13y old was to drive sustainable treatment and care for persons living with SCD in Nigeria. As a representative of Novo Nordisk, she is fulfilling this vision that is completely aligned with their ambition to drive lasting change for persons living with rare diseases such as SCD through public and private partnerships.

Ify loves dancing and she only dance in cute shoes.

Hematology Section Head, Division of Hematology/Oncology; Medical Director, Global Sickle Cell Disease Network, Centre for Global Child Health, The Hospital for Sick Children, Toronto, Canada; Professor, Department of Pediatrics, University of Toronto, Canada

Following medical training in Accra, Ghana, Dr. Odame pursued postgraduate training in Pediatrics and Hematopathology in the UK. As a practicing pediatric hematologist, Dr. Odame has had experience in the UK, Saudia Arabia, and Canada. His academic work and research are focused on sickle cell disease (SCD). Currently, Odame is the Medical Director of the Global Sickle Cell Disease Network at the SickKids Centre for Global Child Health that is building enduring collaborations between clinicians/scientists worldwide to further research, advance care of patients with SCD, and shape SCD policy, particularly in low- and middle-income countries that shoulder the heaviest disease burden. Odame is actively involved in clinical studies aimed at developing novel disease-modifying and curative therapies for SCD, as well as SCD implementation research studies in Africa. Odame’s commitment to WCSCD stems from his belief that a coordinated multistakeholder, cross-sectoral partnership is needed to elevate SCD on the global stage and address the primary barriers of insufficient resource mobilization and inadequate funding to advance efforts to tackle the disease. Odame is an avid Jazz music lover and a keen soccer enthusiast.

Director, External Affairs and Strategic Partnerships, Novartis Global Health & Sustainability

Juliana directs the external engagement and partnership strategies for Novartis Global Health Programs, including Sickle Cell Disease, Malaria, Leprosy, and Chagas disease. In her role, she also helps to coordinate external engagements for Novartis Global Health & Sustainability, including senior-level government interactions and Novartis’s presence at key global health summits and forums. As part of the Novartis Africa SCD Program, Juliana builds multisectoral partnerships with like minded entities to support comprehensive solutions for SCD through health system strengthening, advocacy and education initiatives.

Prior to her role at Novartis, Juliana worked for the US Government where she was integral to the forming of the World Coalition on SCD.

She lives in across the river from Washington DC, in Old Town Alexandria, with her husband and English Cream Golden Retriever.

CEO, Africa Sickle Cell Organization

Lea Kilenga Masamo is a patient expert making sickle cell a global health priority. She has 10 years’ experience solving sickle cell problems in rural, resource poor communities in sub-Saharan Africa to overcome health, racial, economic and gender inequities that lead to premature and unnecessary death and disability. She is the founder and CEO of Africa Sickle Cell Organization, an organization that envisions a world free from sickle cell suffering no matter where you live.

Her lifetime experience and dedication towards inclusion of patients in global health decision making led to her appointment to the NCD Alliance, “Our Views, Our Voices” Global Advisory committee. Lea is a recognised Sickle Cell Champion in Kenya and has received an award from Kenya’s president H. E Uhuru Kenyatta, for improving sickle cell care in Kenya. She currently works closely with the WHO and global health partners to advance meaningful engagement of people living with NCDs in global NCD response and the global prioritization of SCD. Lea is an Aspen Ideas Health Fellow.

She is pursuing her Masters in Global Health Delivery at the University of Global Health Equity.

Lea’s favourite things are African blues music, chakacha dance and the warm ocean waters.

Coming Soon

Coming Soon

Vice President, Europe Middle East & Africa, Terumo Blood & Cell Technologies

Over the past two decades, Sylvain developed a profound interest and understanding of Global Health while gaining international experience in Medical Device commercial operations. Currently, he leads a team of 350+ professionals dedicated at amplifying Terumo’s contribution to Healthcare across Europe, Middle East and Africa (EMEA). Sylvain holds a PhD in Neglected Tropical Diseases from the University of Oxford, a Master in Applied Biology from the University of Gembloux and a Master in Industrial Engineering from the Gramme Institute in Liège, Belgium.

Sylvain is deeply committed to ensuring that Sickle Cell Disease, one of the most neglected diseases globally, becomes a focal point of public health efforts in areas where it is most prevalent. He passionately believes in harnessing the collective power of diverse expertise, advocating for a collaborative and ambitious approach to effectively manage SCD and mitigate its debilitating symptoms.

Family & friends, mountaineering & climbing fuel Sylvain’s energy tank. His favorite quote is “Life really doesn’t follow a straight line. It zigs and zags, but ultimately, growth mindset drives the trendline in the direction of a better good” Inspired by B. Obama and C. Dweck