About African Rare Disease Research Center ARRC

The African Rare Disease Research Centre (ARRC) is a collaborative, science-driven institution dedicated to advancing rare disease research and innovation in Africa. ARRC’s core mandate is to bring together African researchers, healthcare professionals, and patient advocacy groups to accelerate discovery, develop context-appropriate therapies, and improve the quality of life of people living with rare diseases across the continent.

Rare diseases collectively affect millions of Africans, yet they remain profoundly underrepresented in research, clinical trials, and therapeutic development. This gap has resulted in delayed diagnoses, limited treatment options, and the systematic exclusion of African populations from global rare disease science. ARRC was established to address this imbalance through coordinated research, clinical investigation, and systems-level collaboration.

What We Do

ARRC operates at the interface of clinical research, genomic science, and health systems engagement. Our work goes beyond awareness to actively support and conduct real-world clinical and translational research on rare and neglected diseases affecting African populations.

Our core areas of work include:

1. Collaborative Clinical Research
ARRC facilitates and participates in ethically approved clinical and translational research focused on rare and neglected diseases. We work with licensed healthcare professionals, academic institutions, and research partners to generate evidence that improves diagnosis, disease understanding, and therapeutic development.

2. Genomics and Therapeutic Development
We support the application of genomic science to understand disease mechanisms and to inform the development of new or adapted therapies for conditions that have historically received little research investment in Africa.

3. Research Networks and Capacity Building
ARRC convenes multidisciplinary networks of African scientists, clinicians, and researchers to strengthen local research capacity, promote data sharing, and foster South-South and global collaboration in rare disease science.

4. Patient and Community Partnership
We work closely with patient advocacy groups and affected communities to ensure that research priorities reflect lived experience, ethical standards, and real clinical needs. Patient engagement is integral to our research design, implementation, and translation.

5. Systems and Policy Translation
ARRC engages health institutions and policymakers to translate research findings into improved referral pathways, service planning, and policy frameworks that support people living with rare diseases.

Our Approach

ARRC is research-active and evidence-led. While we do not operate as a clinical service provider, we are directly involved in the design, coordination, and execution of clinical and genomic research in partnership with licensed professionals and accredited institutions.

Our approach is grounded in:

• Scientific rigor

• Ethical research practice

• Regulatory compliance

• African-context relevance

• Long-term systems impact

We reject the notion that Africa should remain a passive consumer of rare disease knowledge. ARRC exists to ensure that African populations are contributors to, and beneficiaries of, global advances in rare disease research and therapy development.

Our Vision

We envision an Africa where rare diseases are no longer neglected, where research and therapeutic innovation reflect African genetic diversity and clinical realities, and where people living with rare diseases have access to informed care, effective treatments, and dignified lives