SCD is a chronic, progressive disorder that affects the blood and can shorten life expectancy, with major impacts on quality of life from early childhood.

It is caused by a genetic change that affects haemoglobin, the protein in red blood cells that carries oxygen. With SCD, red blood cells become rigid and sickle-shaped, which can block blood vessels and reduce blood flow to vital organs.

Common experiences for people with SCD include:

• Vaso-occlusive crises: severe, unpredictable pain episodes
• Progressive organ damage: affecting the brain, lungs, kidneys, and others
• Increased stroke risk, often at a young age
• Chronic anaemia and frequent, sometimes life-threatening infections

Because these complications build over time, SCD is not only episodic—it is a lifelong, progressive disease requiring ongoing care.
 

Beyond clinical appointments, SCD can affect everyday life in ways that may not be immediately visible, including:

• pain episodes and fatigue
• disruptions to education, employment, and family life
• exhaustion from frequent healthcare interactions (physically and emotionally)

Even where care has improved, many people still experience:

• delayed diagnosis
• limited access to specialised treatment
• inconsistent standards of care depending on where they live

These gaps can lead to avoidable complications and shorter life expectancy—even in high-income countries.

Progress in SCD should be measured by what matters most to people living with the condition:

• fewer crises
• better daily functioning
• longer lives
• fair, equitable access to care
   

SCD is a clear example of where disease burden and health inequities intersect. Communities most affected by SCD have often been:

• underserved by healthcare systems
• under-represented in research and innovation

As a result, many people face:

• gaps in early diagnosis and newborn screening
• limited access to comprehensive, multidisciplinary care
• treatment options that focus largely on symptom management

Addressing these unmet needs requires long-term action beyond developing new medicines. It also requires partnerships, community engagement, and sustained improvements across the entire care pathway.
 

At Novo Nordisk, our work in SCD goes beyond innovation. It is built on a broader commitment to health equity and partnership with the SCD community.

Building on experience in rare blood disorders, we aim—together with the community—to help reframe SCD as the chronic, progressive, life-threatening condition it is, and to support better understanding, treatment, and prioritisation.

Our commitment extends beyond clinical development. We work with:

• patient organisations and advocates
• healthcare professionals
• policymakers

Our focus includes:

• raising awareness of the lived experience of people with SCD
• highlighting long-term consequences and unmet needs
• advocating for more equitable access to diagnosis, care, and innovation

From the beginning, Novo Nordisk has engaged patient representatives and carers as partners—using their insights to shape development, measurements, and collaboration with regulators and health systems.

We believe meaningful change in SCD requires listening to the community, addressing systemic inequities, and prioritising what truly matters to people living with SCD.