Global Cure for SCD Conference 2021: Presentations from Sickle Cell community organizations around the world

• FENAFAL: The Federação Nacional das Associações de Pessoas com Doença Falciforme (National Federation of Associations of People with Sickle Cell Disease) is a community organization in Brazil that helped share the story of four people with sickle cell disease who were cured with bone marrow transplant.



• I-X-L: The I-X-L Sickle Cell Awareness Foundation is a community organization in the Netherlands that promotes a holistic approach to sickle cell disease treatment. The presentation describes the work of I-X-L and two community members discuss their different experiences living with sickle cell disease and treatments including lifestyle changes and bone marrow transplant.



• Metro Seattle Sickle Cell Task Force: The Metro Seattle Sickle Cell Task Force provides life-enhancing education, services and programs for individuals living with sickle cell disease in the Seattle, Washington area of the USA. The presentation describes the experience of a mother and her son after he received a bone marrow transplant to cure his sickle cell disease.



• Sickle Cell Association of Kentuckiana: The Sickle Cell Association of Kentuckiana provides sickle cell disease information, education, and client services within the State of Kentucky and the Louisville Metropolitan area of the USA. The presentation describes the work of the organization and the questions and conerns that their community members have about treatments to cure sickle cell disease.



• Sickle Cell Foundation of Tennessee: The Sickle Cell Foundation of Tennessee works to improve the treatment, quality of care, quality of life, and long-term outlook for individuals living with sickle cell disease by research, education, awareness and advocacy in the state of Tennessee of the USA. The presentation describes the work and mission of the organization.



• Sickle Cell Society: The Sickle Cell Society supports and represents people affected by sickle cell disorder to improve their overall quality of life in the United Kingdom. The presentation describes the work of the organization in helping patient advocacy.