Patient Leadership, Research & Advocacy
Patient Leadership, Research & Advocacy
People affected by sickle cell disease and thalassaemia should shape the decisions that affect their lives. We connect their experience with healthcare, research and community action.
Patients know the realities of care.
Everyday experience can reveal barriers that are easy to miss in a clinic: access to appointments, stigma, emotional wellbeing, treatment and the demands placed on families. Plasma of Hope brings community insight together with healthcare knowledge and partnerships to advocate for improvements that matter to people living with these conditions.
Where lived experience leads
Patient engagement
Workshops give patients, carers and families space to discuss what matters, ask questions and contribute ideas for change.
Research collaboration
We bring community perspectives into conversations with academic and healthcare partners about quality of life, inequalities and access to care. Individual participation is subject to consent and safeguards.
Healthcare education
We share lived-experience insight with professionals and learners to build understanding of sickle cell disease and the realities of accessing care.
Wider advocacy
Local experience informs national and European discussions, including through our membership of the European Sickle Cell Federation.
Stories and heritage
Our oral history work preserves experiences across generations and shows how treatment, support and everyday life have changed.
Explore the storiesRespectful involvement, from the start.
We aim to involve patients and carers in ways that work for them, from identifying priorities to reviewing outputs. We explain why information is collected, seek informed consent where needed, protect confidentiality and show how feedback informs action.
We recognise that lived-experience expertise takes time. Where project resources allow, we consider expenses or payment for participation. Our founder, Marie-Claire Kofi, combines personal experience of sickle cell disease with a professional background in diagnostic radiography.
Meet our founderBring your perspective to the conversation.
We welcome patients, parents, carers, researchers, healthcare professionals and community organisations interested in workshops, training, research engagement or collaborative projects.
Contact Plasma of HopeWe work with community organisations, education providers, researchers and healthcare services. Specific collaborations are described in our projects and news.
See our projectsSafeguardingAsk about privacy and consent