As you are aware, Sickle Cell Disorder (SCD) remains one of the most prevalent genetic blood disorders globally, with Nigeria bearing the highest burden worldwide. While significant progress has been made in improving survival rates through increased awareness, newborn screening, improved healthcare access, and advances in treatment, many conversations around sickle cell disorder continue to focus on DOOM and GLOOM - focusing predominantly on the pain, on the complications, or on merely surviving.
However, persons living with SCD are redefining the narrative. Across diverse sectors, individuals living with sickle cell disorder are pursuing education, building and exceling in a variety of careers, raising families, leading organisations, advocating for change, and contributing meaningfully to society despite the challenges associated with the condition.
As part of activities commemorating the 2026 World Sickle Cell Day, SCFN will be hosting a Virtual Panel Discussion themed “Beyond Survival: Thriving with Sickle Cell” – seeking to spotlight the lived experiences, resilience, aspirations, achievements, and realities of persons living with SCD, while fostering a more empowering and holistic conversation around quality of life and longevity.
VIRTUAL FORMAT
The virtual format is designed to provide broad, global accessibility and participation across geographical boundaries - including young people, healthcare professionals, caregivers, advocates, policymakers, and the entire sickle cell community.
GOAL
The GOAL OF THE PANEL DISCUSSION is to promote a more empowering, hopeful, yet truthful narrative around sickle cell disorder, by highlighting the experiences, resilience, and achievements of persons living with SCD who are thriving despite the challenges of the condition.
OBJECTIVES
The Objectives of the Panel Discussion are TO:
- Amplify the voices and lived experiences of persons living with sickle cell disorder globally
- Shift public discourse from mere survival toward wellbeing, productivity, purpose, and quality of life.
- Address psychosocial, educational, professional, relational, and mental health dimensions of living with SCD.
- Inspire hope and resilience among young people living with sickle cell disorder and their families.
- Promote advocacy, inclusion and supportive policies for persons living with SCD.
- Foster dialogue among stakeholders within the sickle cell ecosystem for the benefit of the community
OBJECTIVES
- Amplify the voices and lived experiences of persons living with sickle cell disorder globally
- Shift public discourse from mere survival toward wellbeing, productivity, purpose, and quality of life.
- Address psychosocial, educational, professional, relational, and mental health dimensions of living with SCD.
- Inspire hope and resilience among young people living with sickle cell disorder and their families.
- Promote advocacy, inclusion and supportive policies for persons living with SCD.
- Foster dialogue among stakeholders within the sickle cell ecosystem for the benefit of the community
THEME FOCUS AREAS
- Living beyond the survival narrative
- Mental health and emotional wellbeing
- Education, career growth, and productivity
- Relationships, marriage, and family life
- Advocacy, visibility, and self-empowerment
- Managing stigma and societal perceptions
- Faith, resilience, and support systems
- Navigating the healthcare system
- Self-management
- Youth perspectives
KEYNOTE SPEAKERS, PANELLISTS, MODERATOR
This Panel Discussion is unique in that the Keynote Speakers, Panellists, and Moderator are all individuals living with sickle cell disease who bring firsthand experience of its realities and challenges, and who are actively reshaping the narrative from one of doom and gloom to one of hope, resilience, and thriving.
KEYNOTE SPEAKERS & TOPICS:
- Ms. Wunmi Bakare (Advocate for Sickle Cell Awareness and Patient Empowerment; Public Speaker; Nigeria)
- Ms. Zainab Garba-Sani (Health Researcher & Health Policy Expert; UK/USA)
PANELLISTS:
A powerhouse panel of thought leaders in the community will unpack critical questions at the heart of this year’s theme, offering fresh perspectives grounded in experience and creativity:
- Bukola Bolarinwa (Founder, Haima Health Initiative; Sickle Cell Advocate; UK)
- Mr. Funso Sobande (Finance Expert & Member, Board of Sickle Cell Foundation Nigeria; Nigeria)
- Adekunle Gold (Popular Musician, Singer, Songwriter, Influencer; Global Artiste)
- Iggie Aikhomu (Public Health Nutritionist; UK)
- Dr. Michelle Matthews (Physician, SCD expert; USA)
- Oluwafemi Ajayi (Global SCD Advocate, Public Speaker)
- Zakareya Ebrahim Alkadhem (Secretary-General of the Bahrain Society for Sickle Cell Disease Patient Care; Bahrain)
MODERATOR
Dr. Titilope Fadipe: Professor of Pediatric Hematology and Oncology at Baylor College of Medicine and is the Co-Director of the Sickle Cell and Thalassemia Program at the Texas Children’s Hospital, USA
PARTICIPANTS
Participants will comprise, persons with sickle cell disorder (sickle cell warriors), Advocacy and Support groups, NGOs, healthcare workers, government/policy makers, development partners, researchers/academics, the private sector, international organisations, youth advocates, parents and caregivers, community-based organisations (including faith-based organisations), the media and the general public.
ANTICPATED OUTCOMES OF PANEL DISCUSSION
The Anticipated Outcomes of the Panel Discussion will include the following:
- Enhanced understanding of the realities of living with sickle cell disease, including the challenges, opportunities, and achievements of individuals affected by the condition.
- A Shift in the Narrative Around Sickle Cell Disease, promoting a more balanced and empowering narrative that highlights resilience, success, innovation, and the potential to thrive while living with sickle cell disease.
- Amplification of Lived Experiences and greater visibility and appreciation of the voices, perspectives, and contributions of persons living with sickle cell disease in shaping policy, practice, research, and advocacy.
- Inspiration, hope, increased motivation and optimism among persons living with sickle cell disease, their families, caregivers, and the wider community
- Strengthened Advocacy and Enhanced commitment among stakeholders, including policymakers, healthcare providers, researchers, civil society organisations and development partners - to support initiatives that improve quality of life of persons living with sickle cell disease.
- Knowledge Exchange and Learning through sharing of practical insights and best practices that can contribute to improved care, support systems, and opportunities for persons living with sickle cell disease.
We look forward to your participation in this important conversation as we continue to work together to improve the lives of persons living with sickle cell disorder and their families.
With warm regards and determination,
Dr. Annette Akinsete
