“When I hear about IBHO, I finally gain hope. Knowing that my voice matters – we represent the unrepresented, speak for the unspoken. Because the aim in the name is Improving Black Health Outcomes.”
19th June is World Sickle Cell Awareness Day and with the condition being a key focus for our IBHO BioResource programme, we commissioned the video above that captures A Star's (aka Alidor Gaspar) lived experience of sickle cell and the importance of representation and participation in health research.
About A Star
Born and raised in East London to Ghanaian parents, Alidor is also the founder of the Hidden Pain Society, a platform that raises awareness of invisible illnesses like sickle cell and advocates for better support and understanding.
This is the second time A Star has collaborated with the BioResource on outreach projects, using his voice and lived experience to connect with communities often underrepresented in research. His spoken word piece, released for World Sickle Cell Awareness Day 2025, is a raw and resonant reflection on identity, resilience, and the power of being seen.
Collective Effort
This collaboration was facilitated by Egality Health, with visual storytelling by filmmaker Tracy Kiryango, and a joint creative effort with the IBHO BioResource team, including Dr Juliana Onwumere at King's College London, involved on the development and refinement of the lyrics.
The result: a spoken word piece that not only informs but inspires—capturing lived experiences and amplifying the voices behind the research.
Playing our Part: A Research Resource Built for Representation
The IBHO BioResource is a national research programme led by the NIHR BioResource in collaboration with Genomics England, dedicated to improving our knowledge and understanding of health conditions and their unique impacts on Black communities. This includes a focused cohort of individuals living with sickle cell, a genetic condition that affects over 18,000 people in the UK and is the country’s fastest-growing genetic condition.
Since its launch, the IBHO BioResource has welcomed over 2,500 volunteers, with approximately half living with sickle cell, including children. This milestone reflects the community’s commitment to shaping more inclusive research. The resource has already attracted its first study application focused specifically on sickle cell, marking an important step toward improving patient outcomes.
Through the IBHO BioResource, researchers are investigating how conditions like sickle cell and others develop and impact individuals from Black ethnic backgrounds. The programme invites people aged 16+ from Black African, Black Caribbean, and Black British communities to participate—whether they have a health condition or not. Individuals with a confirmed diagnosis of sickle cell or thalassaemia are also encouraged to join, regardless of ethnicity.
By contributing a blood or saliva sample and completing a health and lifestyle questionnaire, participants help shape future healthcare strategies and ensure that research findings are relevant and inclusive.
How to Get Involved
If you are interested in learning more or signing up, visit the IBHO BioResource webpage.
Check out the IBHO BioResource YouTube playlist for more information on taking part and why health research participation is so important.
Join the IBHO BioResource today
Complete our short online form to register your interest and check available locations to provide a sample
