Weekly Spotlight - 07.11.24

Community

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Sickle Cell Alliance Launch: Strengthening Community Voice

The launch of the Sickle Cell Alliance spotlighted urgent challenges faced by patients, from discrimination and delayed care to a lack of trust in healthcare systems. Despite these barriers, the event underscored the power of resilient community networks and the vital need for better education and resources. Calls for increased awareness and data-sharing initiatives emerged, emphasizing the unique value of patient contributions in driving new treatments and empowering advocacy.

Global Genomics Conference 2024

Don't miss these high-level discussions with senior NHS leaders, genomics industry experts, policymakers, and specialists at the Global Genomics Conference 2024

In the News

Improving Black Health Outcomes with New Research Initiative

The Improving Black Health Outcomes (IBHO) BioResource aims to enhance research on health conditions affecting UK Black communities, focusing on sickle cell, mental health, and more. Volunteers, like Des and Stephanie, contribute to this initiative, which seeks to address under-representation in medical research and improve treatment options.

Africa's Genetic Diversity: Key to Future Drug Innovation

Africa's genetic diversity is underutilised in drug research, says Prof Kelly Chibale. He advocates for more clinical trials in Africa to tailor medicines effectively. Chibale emphasises African leadership in research to address local health needs, fostering innovation and economic growth on the continent.

Sickle Cell Genomics: Transforming Lives Through Research and Collaboration

Genomics England's initiative focuses on improving sickle cell research through genomics, aiming to reduce health disparities. By collaborating with experts and patients, they seek to enhance understanding and treatment options. The programme prioritises patient-led research, fostering a supportive community to advance healthcare for those affected by sickle cell.

Overcoming Stigma: Ayoola Olajide’s Journey with Sickle Cell

Growing up in Nigeria with sickle cell, Ayoola Olajide faced challenges and social stigma that were difficult to understand and endure. Drawing from his personal experiences, he founded Sickle Cell News and World Reports, an online platform aimed at sharing inspirational stories from the sickle cell community. His mission is to challenge stereotypes and reclaim narratives of belonging for those affected by this condition.