This event has ended. Visit the official site or create your own event on Sched.
                                                      THIS EVENT IS OVER NOW

Recordings of the sessions are available NOW by clicking on the session you are interested in.

ISC and its partners organised the 9th edition of the Science Summit around the 78th United Nations General Assembly (UNGA78) on 12-29 September 2023.
The role and contribution of science to attaining the United Nations Sustainable Development Goals (SDGs) will be the central theme of the Summit. The objective is to develop and launch science collaborations to demonstrate global science mechanisms and activities to support the attainment of the UN SDGs, Agenda 2030 and Local2030. The meeting will also prepare input for the United Nations Summit of the Future, which will take place during UNGA79 beginning on 12 September 2024.
Back To Schedule
Thursday, September 21 • 9:30am - 12:30pm
[VIRTUAL] Sickle Cell Disease: Gene Therapy to Improve Health and Cure Disease (210914)

Sign up or log in to save this to your schedule, view media, leave feedback and see who's attending!

Feedback form is now closed.

Achieving the Sustainable Development Goals (SDGs) for health in many countries in Africa will include addressing sickle cell disease (SCD), a chronic non-communicable disorder (NCD). Africa is the epicenter of the disease burden: an estimated 80% of patients live in Africa and more than 300,000 new babies with SCD are born on the continent each year. Historically, health systems in many regions have been ill-equipped to provide optimal preventative and therapeutic healthcare over the life-course of patients with SCD. The result has been high rates of mortality and severe morbidity beginning in early childhood. In this context, the current era of scientific innovation holds promise for helping patients, health workers, policy makers, and other stakeholders to make a sustained impact on population health as it relates to SCD.

Some of the most significant advances in science have been in genomics with the completion of the Human Genome Project in 2003 and Gene Editing, with recognition of the latter by the Nobel Prize in 2020 to Jennifer Doudna and Emmanuelle Charpentier. The translation of genomic science to improve health has resulted in clinical trials with cure of sickle cell disease using gene therapy. This has led to an increase in investment and interest from key stakeholders, particularly the patient community, as well as discussion to ensure equity and access to these interventions, as well as integration within the existing interventions and health systems.

Tanzania convened a sickle cell Session in 2022 at the Science Summit at UNGA click this link for more details. For 2023, this Thematic Session will focus on four areas: (1) State of health of Sickle Cell Disease at national, regional, and global level. (2) Progress in Science and Technology with impact on improving health and curing sickle cell disease. (3) Partnerships in health and science to integrate and leverage progress in different sectors. (4) science policy and science investment that is required to ensure universal access to research ad health. The focus will be on sickle cell disease. The main goal is to develop strategies to improve health in sickle cell disease through the generation and application of scientific knowledge.

Tanzania Academy of Sciences https://www.taas-online.or.tz/ will convene this thematic session. Partners will include African Leadership Institute (AfLI) https://alinstitute.org/,
Muhimbili University of Health & Allied Sciences (MUHAS) https://www.muhas.ac.tz/, SickleInAfrica https://www.sickleinafrica.org/ . Institut Pasteur de Bangui https://pasteur-bangui.org/, Tanzania UK Health Diaspora Alliance (TUHEDA). Government of Tanzania: Embassy of Tanzania to USA and Permanent Representative to the United Nations, Ministries: Foreign Affairs, Health, Education, Science & Technology.

The event speakers will feature national and global leaders in SCD-focused biomedical research, and health. The event will serve to educate a diverse audience of stakeholders on current research efforts underway and to foster dialogue that will inform strategies for accelerating SCD-focused science, promoting development of research infrastructure through partnership with global partners, and assuring sustainability of science in improving health of SCD in Africa and globally.

The session will:
  • Educate stakeholders on state of Sickle Cell Disease with regards to health. This session will provide an overview of the public health magnitude of disease and outline the progress made at global, regional and national level. With both immediate and long-term implications for improving health outcomes.
  • Outline the significant progress in science and technology in genomics, gene editing and gene therapy. This session will provide examples of how these advances have launched tremendous potential in, not only improving health, but curing diseases.
  • Discuss successful partnerships in science and technology which have transformed health. This session will recommend pragmatic approaches to multi-sectoral and cross-sectoral collaboration that will maximize the quantity and quality of research to address SCD in Africa with an emphasis on conducting research in Africa.
  • Recommend Policy and Investment strategies that will facilitate universal access to existing and new technologies.
  • Outline how the output of basic biomedical science, including the elucidation of genetic underpinnings of disease, will translate to improved health care. Showcase current efforts to discover definitive gene therapy cures for SCD and explore the anticipated enablers and barriers to achieving widespread access for patients in Africa.
Target audience
Multi-disciplinary stakeholders that are utilizing science and technology to improve health in Sickle Cell Disease. Integrated efforts are ongoing at country, regional, and global level. Participants are anticipated to include patient advocates, healthcare providers, policy makers & other government officials, researchers, Industry, NGOs, philanthropies, and multilateral health and research organizations.

Organising committee
Tanzania Academy of Sciences (TAAS). https://www.taas-online.or.tz/; Prof Yunus Mgaya; Prof Eligius Lyamuya;  Prof Frank Minja; Dr Khadija Malima; 
Africa Leadership Institute. AFLI: https://alinstitute.org/; Prof Julie Makani, Prof Yap Boum, Nesia Mahenge

Sickle Charta <sicklecharta@blood.ac.tz>


Nesia Mahenge, Tanzania
Julie Makani, Tanzania
Francoise Baylis, Canada
Emmanuel Balandya, Tanzania
Mari da Veiga, UK
Opening Session
Vice Chancellor, Muhimbili University of Health (MUHAS), Appolinary Kamuhabwa, Tanzania
Special Adviser to SecretaryGeneral, United Nations, Mojanku Gumbi 
State of Health of Sickle Cell Disease
State of Sickle Cell Disease: Leon Tshilolo, DRC
Health Policy for Sickle Cell Disease: Obiageli Nnodu, Nigeria
National Sickle Cell Programmes: Andrew Campbell, USA
Community Perspectives: John James, UK
Biomedical Science to improve health in SCD
Gene & Cell Therapy for SCD: Grace Moshi, Singapore/Tanzania
Curative Therapy for SCD: Gesa Pellier, Switzerland
Curative therapy for SCD and HIV: Jennifer Adair, USA
Gene & Cell Therapy in Haematology: Johnny Mahlangu, South Africa 
Partnerships for Science and Health
Global Networks: Cissy Kityo, Uganda
Networks in Africa: Wil Ngwa, USA
Centres of Excellence: Mohammed Janabi, Tanzania
Gene Therapy to SCD: Vence Bonham, USA
Science Policy and Science Investment
Global Investment: George Mensah, USA
Investment in under-resourced settings: Irene D Mullan, AFLI
Philanthropy: Gene Bukhman, USA a

avatar for Faustine Ndugulile

Faustine Ndugulile

Medical Doctor specialized in Public Health and Medical Microbiology
Faustine Ndugulile is a Medical Doctor specialized in Public Health and Medical Microbiology.Before joining politics, Dr. Ndugulile worked as the Assistant Director of Diagnostic Services in the Ministry of Health Tanzania and was tasked with the laboratory system readiness to roll... Read More →
avatar for Ms. Mojankunyane Gumbi

Ms. Mojankunyane Gumbi

The Special Adviser for Addressing Racism in the Workplace, UN
Secretary-General António Guterres has appointed Ms. Mojankunyane Gumbi, of South Africa, as the Special Adviser for Addressing Racism in the Workplace. The Special Adviser provides a strategic advice to the Secretary-General on addressing racism and racial discrimination, as well... Read More →

Janet Daby

Parliamentary Researcher for Janet Daby, MP Member of Parliament for Lewisham East
avatar for Funmi Olopade

Funmi Olopade

Professor, The University of Chicago Medical Center
The University of Chicago Medical Center, Illinois, United States.  I will focus discussion on:1. Sickle Cell Disease and Gene Therapy2. Africa Light Source3. Precision Medicine4. Breast Cancer
avatar for Leon Tshilolo

Leon Tshilolo

Directeur de Recherche, Institut de Recherche Biomédicale/CEFA-MONKOLE
I'm a pediatrician hematologist with a good experience in tropical disease,  malaria and expertise in SCD. I'm the President of an African network of SCD called REDAC. Since 2022, I'm Co chair in Sickle in Africa Consortium.  I'm  Professor of Pediatrics and Haematology at the... Read More →
avatar for Andrew Campbell

Andrew Campbell

Comprehensive Sickle Cell Disease Program Director, Children's National
Dr. Andrew Campbell's distinguished training and career path began at Morehouse College. He continued medical school at Case Western Reserve University and completed post graduate training at Massachusetts General Hospital (Harvard) and Lurie Children's Hospital (Northwestern University... Read More →
avatar for Matthew Porteus

Matthew Porteus

Clinical Trial Specialist, Stanford University
Matthew Porteus MD, PhD is the Sutardja Chuk Professor of Definitive and Curative Medicine and a Professor in the Department of Pediatrics, Institute of Stem Cell Biology and Regenerative Medicine and Maternal-Child Health Research Institute at Stanford.  His primary research focus... Read More →
avatar for Julie Makani

Julie Makani

Principal Investigator, Muhimbili University of Health and Allied Sciences (MUHAS) and SickleInAfrica
Prof. Julie Makani is from the Department of Haematology and Blood Transfusion at Muhimbili University of Health and Allied Sciences [(MUHAS) www.muhas.ac.tz], where Tanzania established one of the world’s largest single-center study cohorts for sickle cell disease in Muhimbili... Read More →
avatar for Francoise Baylis

Francoise Baylis

Distinguished Research Professor, Emerita, Dalhousie University
Françoise Baylis CM, ONS, PhD, FRSC, FISC is Distinguished Research Professor Emerita, Dalhousie University, Canada. She is the author of Altered Inheritance: CRISPR and the Ethics of Human Genome Editing. She was a member of the Planning Committee for the First and Third International... Read More →
avatar for Appolinary Kamuhabwa

Appolinary Kamuhabwa

Deputy Vice Chancellor ARC, Muhimbili University of Health and Allied Sciences
Professor Appolinary Kamuhabwa is a Professor of Pharmacology at Muhimbili University of Health and Allied Sciences (MUHAS) in Tanzania. His area of research interest is therapeutics and other pharmacological interventions in infectious and non-infectious diseases (cancer, and cardiovascular... Read More →
avatar for Nesia Mahenge

Nesia Mahenge

Country Director and MUHAS SCD Adviser, CBM International / MUHAS
Nesia is the Country Director at CBM International with over 20 years of expertise in International Development, Public Health Management, Health Education, Climate Change and Resilience, Disability Inclusion, Governance, Economic Development, and NGOs Management.She serves as Hub... Read More →
avatar for Grace Moshi

Grace Moshi

Senior Consultant Haematologist, KK Women's and Children's Hospital
Dr Grace Moshi MD, FRCPA is a senior consultant haematologist at the KK Women and Children’s Hospital in Singapore, whose interest includes laboratory and molecular haematology, blood banking, cellular processing laboratory and point of care testing.  Contemporaneously, she is... Read More →
avatar for Obiageli Nnodu

Obiageli Nnodu

Director, CESRTA, University of Abuja
I am a Professor of Haematology and Blood Transfusion, Director, Centre of Excellence for Sickle Cell Disease Research and Training at University of Abuja (CESRTA), the National Coordinator of the American Society of Hematology Consortium for Newborn Screening in Africa (CONSA), the Nigerian Principal Investigator for SPARCO, Abuja Coordinator for SickleGenAfrica and Co-PI for the UK NIHR Patient centred management of sickle cell disease in Su... Read More →
avatar for George Mensah

George Mensah

Director of CTRIS, NHLBI, National Institutes of Health (NIH)

Jackie Chimhanzi

CEO, African Leadership Institute
avatar for Cissy M Kityo

Cissy M Kityo

Executive Director, Joint Clinical Research Centre (JCRC), Uganda
She is an experienced specialist medical doctor, vaccinologist, and Public Health expert with over 27 years of experience in conducting and coordinating AIDS research and care for HIV patients. She is the Executive Director of the Joint Clinical Research Centre (JCRC). She is among... Read More →
avatar for Emmanuel Balandya

Emmanuel Balandya

Prof. Emmanuel Balandya MD, PhD is a physician-scientist and PI of the Sickle Pan-African Research Consortium (SPARCO)-Tanzania (U01 HL156853; NHLBI). He is based at the Muhimbili University of Health and Allied Sciences (MUHAS) in Tanzania where he serves as Acting Deputy Vice Chancellor... Read More →
avatar for Prof Yap Boum II

Prof Yap Boum II

Executive Director of the Institute Pasteur of Bangui in Central Africa Republic
I am the Executive Director of the Institute Pasteur of Bangui in Central Africa Republic after 14 years with Epicentre, The research arm of Médecins Sans Frontières (MSF). I have been  implementing clinical research studies on TB, malaria, HIV, Ebola, COVID-19 across Africa and teaching Public Health and Microbiology in several Universities... Read More →

John James OBE

Chief Executive Officer, Sickle Cell Society UK
avatar for Jennifer E Adair

Jennifer E Adair

Associate Professor, Fred Hutchinson Cancer Center
Jen is an Associate Professor in the Translational Science and Therapeutics Division and Cell and Gene Therapy Program at the Fred Hutchinson Cancer Center, and a Research Associate Professor at the University of Washington in the Departments of Medical Oncology and Laboratory Medicine... Read More →
avatar for Johnny Mahlangu

Johnny Mahlangu

Professor, Univeristy of the Witwatersrand

Prof Wil Ngwa

Director, Global Health Catalyst
avatar for Irene Dankwa-Mullan

Irene Dankwa-Mullan

Chief Health Officer, Marti Health
Dr. Irene Dankwa-Mullan is a global thought leader, physician researcher and health equity champion, with over 20 years of diverse leadership experience in various sectors including public health, research, government, academia, industry and technology start-ups.  She is currently... Read More →

avatar for Mari da Veiga

Mari da Veiga

Programmes and Partnerships Manager, Imperial College London
Since November 2022, Mari leads on Programmes and Partnerships for Imperial’s Global Development Hub – a strategic flagship project that brings together Imperial’s community to develop, amplify and support research and education impact in Lower Middle-Income Countries (LMICs... Read More →

Thursday September 21, 2023 9:30am - 12:30pm EDT